AN ANALYSIS OF CULTURAL COMPETENCE, CULTURAL DIFFERENCE, AND COMMUNICATION STRATEGIES IN MEDICAL CARE
by MARISA KRISTINE ABBE
Submitted in partial fulfillment of the requirements
For the degree of Doctor of Philosophy
Dissertation Adviser: Dr. Atwood Gaines
Department of Anthropology
CASE WESTERN RESERVE UNIVERSITY
January, 2011
CASE WESTERN RESERVE UNIVERSITY
SCHOOL OF GRADUATE STUDIES
We hereby approve the thesis/dissertation of
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candidate for the ______degree *.
(signed)______(chair of the committee)
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*We also certify that written approval has been obtained for any proprietary material contained therein.
Table of Contents
List of Figures ...... 3 Acknowledgments...... 4 Abstract ...... 5 Chapter One: Introduction ...... 7 Chapter Two: The Setting and Methodology ...... 63 Chapter Three: Do Cultural Competence Communication Strategies Alleviate Cultural “Barriers?” ...... 96 Chapter Four: Case Studies in Cross-Cultural Medical Communication ...... 132 Chapter Five: The Lifeworld and Explanatory Models ...... 177 Chapter Six: Medical Interpreting ...... 224 Chapter Seven: Conclusion ...... 257 Appendix I: Patient and Clinician Interviews and Patient Survey ...... 274 Appendix II: Transcription Notations ...... 282 Bibliography ...... 284
List of Figures
1.1 Misher’s Model of the Lifeworld 29 2.1 Clinic 2006 Annual Report Data 68 2.2 Clinic Organizational Structure 70 2.3 Methods Used 72 2.4 Patient Age 83 2.5 Patient Sex 83 2.6 Patient Country of Origin 84 2.7 Patient Primary Language 84 2.8 Patient Biomedical Diagnosis 85 2.9 Clinician Sample (n=90) 86 2.10 Patient Age 88 2.11 Patient Sex 88 2.12 Patient Country of Origin 89 2.13 Patient Primary Language 89 2.14 Patient Biomedical Diagnosis 90 2.15 Clinician Sample (n=30) 91 3.1 The Purnell Model of Cultural Competence 103 3.2 Slide from Cultural Competence Workshop 109 5.1 Lifeworld Talk in Relation to Present Complaint/biomedical Diagnosis 179
3 Acknowledgments
This dissertation research spans multiple phases of my life and I would like to express gratitude to specific individuals and groups in helping me through this process. I am forever thankful to the People’s Clinic and the clinicians, volunteers, and patients who allowed me access to their personal lives. I am continuously inspired by the dedicated people who sacrifice so much to help people in need. I will always be guided by their beliefs and actions. The Case Western Reserve University anthropology faculty provided me with tremendous knowledge and understanding of the cultural, political, and historical influences on health and illness. They taught me how to think critically and holistically about societal problems and how to contribute to finding solutions. I would like to thank Atwood Gaines for his guidance over the years, listening to my fledgling research ideas, and helping me flesh out a project I was passionate about. Thanks to Charlotte Ikels and Eileen Anderson-Fye for their time, comments, and contributions to this research. And though she is not part of my dissertation committee, Rachel Chapman taught me the importance of witnessing, listening, and using myself not only as a research tool but as an instrument for change. I would also like to thank the University of North Texas anthropology department members for their encouragement, mentorship, and camaraderie. Being part of their anthropology community has helped me grow as a professional, academic scholar, and applied anthropologist. In particular, Alicia Re Cruz, Shimaa Dessouky, Grace Bascopé, Lisa Henry, and Mariela Nuñez-Janes lit a fire which sustained my passion for research and the sometimes not so passionate writing process. Finally, I would like to thank my family, Ann Abbe, David Abbe, Bill Harris, Donna Abbe, and my wonderful husband, Jarrod Berger. For without their help this would have never been possible. At an early age I learned the meaning of kindness, selflessness, and advocacy. With these life lessons and their constant love and support, I have completed this rite of passage. I can never thank you enough.
4 An Analysis of Cultural Competence, Cultural Difference, and Communication Strategies in Medical Care
Abstract
By MARISA KRISTINE ABBE
This research is directed at the repeated findings that minority populations suffer disproportionately from the burden of disease in our society, specifically in the development of disease, health outcomes, and access to care. Even as quality improves on specific measures, disparities often persist. A common reason cited for health inequalities is that the U.S. health care system, in its “one-size-fits-all” approach, is inadequate to meet the needs of minority patients. A proposed solution in biomedicine is cultural competence.
This dissertation investigates how Anglo-American clinicians and Mexican immigrant patients communicate in a medical setting. Because of the popularity of cultural competence as a panacea to health inequalities, my research focused on the following questions: If the medical encounter provides the space for the intersection of cultural differences, how might patients and clinicians locate such differences, how are they talked about or negotiated between participants, and does there exist a set of strategies that clinicians can adopt to be “culturally competent?” Do cultural differences between patients and clinicians cause barriers to treatment? What other factors create
5 barriers? How do patients communicate their treatment preferences, medical beliefs,
and personal information? What is the role of medical interpreters?
This research is based on 24 months of ethnographic research at the People’s
Clinic, a free clinic in a metropolitan area in Texas. I utilized participant observation and
interviews as my primary methods for data collection; I observed 120 medical
encounters and interviewed 30 patients after their encounter.
This research expands the knowledge of the role of culture and cultural
difference in medical encounters. I examined how patients communicated information
from their lifeworld, and whether “cultural” narratives provided by patients would cause barriers to treatment, as assumed by cultural competence models. In light of this research, I propose measures to redefine cultural competence.
Keywords: medical anthropology, medical communication, cultural competence, explanatory models, narrative, Mexican immigrants, nurse practitioners
6 Chapter One: Introduction
This dissertation investigates how clinicians and patients from different linguistic and cultural backgrounds communicate in a medical setting. The research was conducted at the People’s Clinic, a free clinic in a Texas metropolitan city, from July
2006 to July 2008. The research project is situated within larger discourses from medical and social science research fields on health disparities in the US (e.g., medical anthropology, medical sociology, bioethics, epidemiology, medicine, etc.). As varying theoretical models from medical anthropology and linguistic anthropology are used in this project, this introductory chapter is broken into four parts. First, I provide a brief overview of the issue studied, that is, health inequalities and cultural competence. Next
I provide the medical anthropological context of this issue and review pertinent theories about the role of culture in health, migrant and refugee health issues, the study of biomedicine, the notions of explanatory models, illness narratives, and the views of critical medical anthropology. Third, I examine the importance of linguistic anthropology to this research, including an examination of relevant theories and methodological debates. In the fourth section I narrow the focus to the medical setting and review the literature on medical communication including the role of language in health and the role of medical interpreters. Finally, I discuss the dissertation project and situate the research questions among the discourses of medical and linguistic anthropology. I conclude this chapter with an outline of the entire dissertation.
7 I. Health Disparities and Cultural Competence
Immigrant, refugee, and minority populations in the US are often described as being “at risk” for illness and disease because of their cultural differences (Brach and
Fraserirector 2000; OMH 2001; Hirsch 2003). Further, recent studies conclude there are widespread and systematic problems in our healthcare system causing health disparities between minority and Anglo groups. ‘Health disparities’ is a phrase used by health professions to refer to differences in morbidity, mortality, and access to health care that appear along social, cultural, economic, gender, and especially “racial” and “ethnic” lines (Dressler, et al. 2005).
In the U.S., health disparities are well documented in minority populations such as African Americans, Native Americans, Asian Americans, and Latinos. When compared to Anglo Americans, these minority groups have higher incidence of chronic diseases, higher mortality, and poorer health outcomes. Among the disease-specific examples of racial and ethnic disparities is the cancer incidence rate among African Americans, which is 10% higher than among Anglo Americans (Goldberg, et al. 2004). In addition, adult
African Americans and Latinos have approximately twice the risk as developing diabetes.
According to a national survey, Mexican Americans have higher rates of end-stage renal disease, caused by diabetes, and they are 50% more likely to die from type II diabetes than Anglo Americans.1 Minority groups also have higher rates of heart disease,
HIV/AIDS, and infant mortality than Anglo Americans (Goldberg, et al. 2004).
1http://minorityhealth.hhs.gov/templates/content.aspx?ID=3324 accessed 3/2010
8 The socio-economic status model, or the idea that wealth equals health,
influences most minority health research (Hayes-Bautista 2002). This theory contends
that the greater likelihood of living in poverty places groups like Latinos at increased risk
of disease and disability because poverty is highly linked with residing in resource-poor
neighborhoods, a greater likelihood of being exposed to environmental hazards, and a
greater likelihood of intentional and unintentional injury (Carter-Pokras and Zambrana
2001). According to the 2000 U.S. census, 24% of Mexican Americans live below poverty
compared to 7.7% of Anglo Americans.
Latino populations are placed at even greater risk compared to other immigrant
groups because of the high percentage who work in hazardous jobs, are undocumented,
and lack health insurance (Chavez, et al. 1992; Carrillo, et al.2001). However, some
studies have shown that even with insurance and access to health services, both
immigrant and non-immigrant Latinos underutilize health and mental health care (Vega,
et al. 2001).
Aside from the moral argument for ending health inequalities, a recent study
concluded that between 2003 and 2006, the combined costs of health inequalities and premature death in the United States were $1.24 trillion and that eliminating health disparities for minorities would have reduced direct medical care expenditures by
$229.4 billion (The Joint Center 2009).2
A common reason cited for underutilization is that the U.S. health care system, in its “one-size-fits-all” approach, is inadequate to meet the needs of Latinos (Vega and
2http://www.jointcenter.org/hpi/sites/all/files/Burden_Of_Health_FINAL_0.pdf
9 Alegría 2001; Putsch 2002). The proposed solution in current medical discourse is culturally aware and competent medicine. Anthropologists have advocated for a more culturally aware biomedicine since the 1950’s (Foster 1953). However, as cultural competence models become more and more focused on cultural difference, anthropologists must ask how we might contribute to a more holistic understanding of the issue.
A Critical Review of Cultural Competence
A review of the recent medical literature shows that the concern with delivery and accessibility of treatment to immigrants and minorities in medicine is largely limited to a concern for providing culturally sensitive services. Advocates for cultural competence believe that introducing culturally sensitive practices decreases cultural
and linguistic barriers and increases certain patient outcomes, such as patient
understanding, satisfaction, follow-up, and treatment compliance (OMH 2001).
Culture competence models incorporate actions to manage both linguistic and
cultural differences between patients and the health care system. Linguistic
competence is described as an essential component of cultural competence and is
concurrently described as being the bare minimum of culturally competent strategies
(Brach and Fraserirector 2000). Linguistic competence occurs at two levels, the
institutional and individual. Institutions can provide language specific written materials
such as patient sign-in and billing documents, posted signs, and education pamphlets;
clinicians can ensure competence if they are bilingual or use medically trained interpreters to overcome language barriers.
10 The consequences of linguistic barriers have been well documented in the
literature. There are examples of medical encounters where interpreters and clinicians
worked together to ensure an accurate linguistic translation of the information provided
to both the patient and clinician. Likewise, the literature contains examples of patient
visits where interpreters were not accurate, or did not fully translate the information provided to both the patient and clinician; in some cases serious medical errors resulted. These errors were more likely to occur when the interpreter was a friend or family member and was not medically trained as an interpreter (Elderkin-Thompson, et al. 2001; Flores, et al. 2003). Studies that link language barriers with repeat appointments, extra time spent rectifying misdiagnoses, unnecessary emergency room visits, longer hospital stays, and patient misunderstanding and dissatisfaction help to highlight the importance of linguistic competence (Baker, et al. 1998; OMH 2001; Putsch
2002).
Cultural barriers, on the other hand, while infrequently documented in health care encounters have been presumed to include the following (Chavez, et al. 1995;
Browner, et al. 2003):
(1) differences concerning how patients and clinicians act in a biomedical setting (including both verbal and non-verbal behaviors, gestures, and procedures) and differences regarding how clinicians and patients are expected to perform their respective duties/roles; (2) differences in certain cultural assumptions of respect, trust, patient autonomy, and informed consent; and (3) differences with respect to the patient’s and clinician’s explanatory models (the etiology, treatment, and outcome) of the illness.
11 There is an inherent problematic notion of culture in cultural competence models for anthropologists and others who do not hold a reductionist or static view of culture. While cultural sensitivity and awareness are not new ideas in medicine, they have previously been discussed in terms of “cultural bias,” “cultural differences,” or
“cultural misunderstandings” (e.g., Malgady, et al. 1987). It seems to be a recent phenomenon to frame cultural and linguistic differences in terms of how they constitute
“barriers” to the delivery of health care.3 Hence cultural and linguistic differences of the patient, and not necessarily the culture of the medical provider and institution, become incorporated into the medical model as negatively impacting health care, i.e., posing a
“barrier” (Santiago-Irizarry 2001). With the uncritical and increasing use of the term
“barrier” we are led to believe that the patient’s culture is so problematically different that treatment may be impeded or come to a standstill.
Despite the increased attention to the need for cultural competence, several components block the complete acceptance of cultural competence in medical practice as well as in the social sciences. To begin, there is a failure to provide a consistent and comprehensive definition of cultural competence. The question or evaluation of which competencies lead to proficient practices by clinicians and institutions has not been answered by cultural competence advocates (Brach and Fraserirector 2000).
Second, without the operationalization of such a vague and complex concept, practitioners are unsure about how to apply written policies to service delivery. Third,
3 For example, the Office of Minority Health’s (OMH) main website states that they were mandated by the US. Congress in 1994 to, “develop the capacity of health care professionals to address the cultural and linguistic barriers to health care delivery.” Barrier is also the designated term in the OMH’s National Standards on Culturally and Linguistically Appropriate Services (better known as the CLAS Standards), the standard most often used in research and in medical school training.
12 there is a lack of critical questioning of basic assumptions about the role and effect of
cultural differences; for example, statements such as, “all professionals who interact
with minority clients need to possess cultural competence to provide appropriate
services” (Arellano 2004: 10) assumes that only minority clients possess a type of culture
that is problematic or needs a special set of behaviors to accompany appropriate
treatment.
A fourth critique is that few studies exist which explicitly investigate how
utilization of culturally competent services impacts the acceptance or perceived
effectiveness of services by the target populations (Beach, et al. 2005). In fact, one
review article highlights a lack of research on the techniques and behaviors of cultural competence, whether culturally component actions affect patient outcomes, and whether or not cultural and linguistic competence in medicine could reduce racial and ethnic health disparities (Brach and Fraserirector 2000).
Lastly, cultural competence models do little for the structural, political, or economic causes of limited access and ill health. In fact, accompanying the cultural competence movement is an explicit shift away from a focus on the role of poverty, health insurance and access, discrimination, and hazardous jobs in the development of ill health and disease to an analysis of the role of cultural difference (Hirsch 2003; Shaw
2005).
Actual examples from medical encounters of how culture and cultural differences may negatively impact the diagnosis or treatment of an illness are very scarce, and are even more so in the mental health field. When might a cultural issue
13 become a “barrier” and do cultural differences exist which do not evolve into barriers
(e.g., Jenkins, et al. 1996)? Are cultural barriers fundamentally different from other
types of barriers from non-immigrant or non-minority (i.e., “non-cultural”) patients?
And to question the model further, does the narrow focus on cultural difference result
in the “racialization” of health beliefs if the patient’s practices are reduced to an
understanding of illness and disease in terms of their culture and ethnic identity? If the
medical encounter provides the space for the intersection of cultural differences in
health care, how might patients and clinicians locate them, how are they talked about
or negotiated between participants, and does there exist a set of strategies that
clinicians can adopt to be “culturally competent?”
Without clear answers to these questions, many argue that there is little
agreement as to what constitutes cultural competence in medicine and why it is needed
(Brach and Fraserirector 2000; Hirsch 2003). As extensive efforts are underway to create enforceable national standards for cultural competence, I believe we must take a step back to identify both how culture plays a role in health care treatment and delivery and how other issues such as poverty and class fit into a cultural competence model.
Cultural competence definitions and theoretical models will be more explicitly discussed in Chapter three.
II. Medical Anthropology
The research discussed in this work is drawn largely from Medical Anthropology.
From this field I utilize theories on Mexican ethnomedical systems, the role of culture in
14 health, conceptualizations of migrant and refugee health, explanatory models, illness
narratives, the study of biomedicine, and critical medical anthropology.
Mexican Ethnomedical Systems
Anthropologists have written extensively about Latin American cultures, customs, healing beliefs and practices, and ethnomedicines (for example, Rubel 1960;
Kiev 1968; Ingham 1970; Clark 1970; Garro 1986; Foster 1994; Finkler 2004). The early work of George Foster (1953), Rubel (1960), Clark (1970) and others moved ethnomedical research in anthropology away from studying the exotic practices of immigrants to a richer understanding of health and illness in the broader sociocultural arena. They also foreshadowed the problem of culturally appropriate practices in medicine and low health care utilization rates among immigrants and minorities (Paul
1963; Browner 1994). These studies are particularly pertinent today because immigrants bring with them culturally-specific beliefs, assumptions, and values which may not correspond with biomedicine, including procedural differences of accessing and navigating the health care system and the cultural/social knowledge of how to act like a
“patient,” as well as larger differences in the actual illness.
For example, Finkler (2004) described the Mexican medical system as a mix of biomedicine and alternative healing systems, including professional and folk (e.g., homeopathy, acupuncture, and curanderos). Finkler found that clinicians at one urban hospital in Mexico held etiological explanations for illness that corresponded to traditional folk concepts such as nervios, anger, and susto as well as environmental and social causes. However, their medical training required them to reduce the folk
15 concepts to a diagnosis of disease categories. So while the common folk category of nerves was widely accepted by clinicians, “they reduced “nerves” to an organic disorder of the nervous system” (Finkler 2004: 2046).
A second Mexican classification system of health and illness is humoral or hot- cold dichotomous system. Foster (1994) traced the roots of Latin American humoral medicine back to three ethnomedicines that rely on basic binary oppositions: Greek humoral medicine from approximately the sixth century BC to 400 BC, Indian Ayurvedic medicine dating from the first, forth, and seventh century AD (from classic Ayurvedic humoral medicine as surviving in Sanskrit documents, the Caraka Samhita, the Susruta
Samhita and the Vagbhata), and Chinese humoral medicine dating from the fifth century BC. Humoral principles work to maintain the body’s equilibrium based on metaphorical and thermal hot and cold qualities within food, outside and inside temperature, and a balance of emotions. Foster (1994) contended that in the Mexican system, all foods, herbs, and some other substances (such as iron) have a temperate as well as metaphoric value of “hot” and “cold.” An upset to the body’s equilibrium can cause, or make a person more susceptible, to illness. Therapies for the most part tend to conform to the “principle of opposites” so that a cold remedy works best for a hot illness and vice versa (Foster 1994).
Although all ethnomedical systems are dynamic and changing, it is clear that
Latino immigrants still believe in the importance of this classificatory system to provide a basis for the explanation of illness. Throughout his decades of research in Mexico,
Foster (1994) demonstrated that despite the dominance of Western medicine, millions
16 of people at some level continue to subscribe to a humoral belief system and engage in practices based upon it. Clark (1970) also explained that her second generation
Mexican-American research participants were familiar with the hot-cold system of disease and one-third were able to classify hot and cold foods, dispelling the myth that ethnomedical knowledge is inversely correlated with acculturation. Humoral medicine is discussed further in Chapter five, in the context of an examination of patients’ health beliefs about chronic diseases such as diabetes and heart disease.
Anthropologists have also written about the “new immigration” patterns and how processes like globalization have destabilized local economies and altered migration patterns. Scholars have argued that Latinos, for example, are entering the
U.S. because American culture has permeated their own: “With TV shows, soldiers, and political ideals, the United States has reached out and touched people across an entire hemisphere. It has gotten back immigrants in return” (Suro 1998: 20).
According to the 2000 census, there were roughly 281 million people living in the
U.S. with 31 million people born outside the country. The sheer size of the immigrant population and the radical shift in the sources of immigration have led some scholars to claim that this current wave of migration is unlike any we have seen before in this country, it truly constitutes a “new” immigration (Suárez-Orozco 2003; Reimers 2005).
What is new about this wave is not only is the volume, but also the geographical make up of immigrants. Until the middle of the 20th century, immigrants were mostly
European whereas today, more than 50% of immigrants are from Latin America and 25% from Asia (Reimers 2005).
17 New immigration scholars recognize that the portrayal of “Latinos” as a unified group in some research, policy publications, and discussions is misleading; using a pan- ethnic label such as “Latino” glosses over the contradictions and tensions around class, race, and color that separate the individuals which are included en mass in the label.
Why certain populations migrated to the U.S., when they migrated, and what they are
migrating to cannot be captured in the “Latino” label. For example, the first migratory
wave of Cubans fleeing from Communism to the U.S. in the 1950’s were welcomed and
benefited tremendously from substantial governmental aid, whereas today, Cubans are turned away and deported (Suro 1998). To treat all Cuban immigrants alike, much less all Latinos, simply ignores these historical differences.4
Scholars studying the new immigration focus on economic aspects of migration
such as unemployment, under-employment, lack of access to credit, and wage
differentials. For example, the majority of uneducated immigrants find work in the low-
wage, low-skilled, secondary sector, which limits access to health care, upward mobility,
and financial stability (Suárez-Orozco 2003). There is evidence that the “economic step-
ladder” of the 1950’s, where subsequent generations of migrants steadily gain higher
paying jobs and education levels, is not available today (Suro 1998; Magaña and Hovey
2003). Additionally, while the children and grandchildren of the 19th century European
immigrants benefited from an expansion of the public education system, Latino
immigrants have arrived only to find the U.S. education system dangerously in disrepair
(Suárez-Orozco 2001).
4I will use the term “Latino” when discussing other research that is not specific about which cultural or ethnic groups were surveyed. The research participants in this study were primarily Mexican immigrants.
18 Medical anthropology research indicates that new immigrants, in particular
Latino immigrants, have high rates of depression, anxiety, occupational diseases, and
chronic diseases such as diabetes and heart disease linked to acculturative and
environmental stressors (Padilla, et al. 1998; Carter-Pokras and Zambrana 2001; Portes
and Rumbaut 2001; Chavez 2003).
Meaning-Centered and Interpretive Theories
Beginning in the 1960’s, medical anthropology began to develop and emerged as
a sub-discipline of cultural anthropology in the 1970’s. Medical anthropology largely
focused on ethnomedicines and a comparative, cross-cultural study of health and illness
with some interest in reducing disease, disability, and human suffering, and
international health and public health measures (Paul 1955, 1963; Browner, et al. 1988;
Sobo 2009). Benjamin Paul, an early founder of medical anthropology, specified two
kinds of medical anthropologists in the 1950’s and 60’s: “those who investigate cultural
components in the etiology and incidence of illness and those who analyze popular
reactions to programs of health maintenance and health improvement” (1963: 35).
A contribution of medical anthropologists to cross-cultural health research was
their definition of health as a broad construct, encompassing physical, psychological,
and community/social wellbeing (Sobo 2009). This concept worked better than the
biomedical concept of “disease,” which referred to more biological or physiological
processes. Medical anthropologists further argued for an understanding of the “illness,”
a culturally-constructed experience of being unwell, rather than the disease process
(Kleinman 1980).
19 With a new climate and radical cultural changes in the U.S. during the 1960’s and
70’s, anthropology and medicine changed as well and the research that ensued strengthened the interdisciplinary bonds between them. The very concept of “culture” and what was considered “objective” and “scientific” in anthropology was changing (see
Geertz 1973; Clifford and Marcus 1986). A growing number of symbolic anthropologists
adopted new methods suited to the study of meaning and began to advocate for
interpretive and meaning-centered approaches in the anthropology of religion and,
later, in medical anthropology.
These new approaches were an outgrowth of two influential anthropologists,
Victor Turner (1967, 1969) and Clifford Geertz (1984, 1973) who incorporated hermeneutics, psychological anthropology, and psychoanalysis (Gaines n.d.).
Phenomenology and social interactionism played an important role in anthropology at this time. Borrowing from sociological theories like Garfinkel’s Studies in
Ethnomethodology (1967), Berger and Luckmann’s Social Construction of Reality (1966), and Schutz’s papers on social reality (1962), anthropologists formulated theories about the importance of phenomenology in social science research and the selection of everyday activities and experiences for examining organized, reflexive, accountable, and observable practices (e.g., Goffman 1959).
Early interpretive anthropologists mainly studied traditional therapies and culture-bound syndromes and with these, new methods merged interpretive and symbolic analysis for cross-cultural research in religion and psychology (Good and Good
1982). When the American Psychiatric Association published the first Diagnostic and
20 Statistical Manual of Mental Disorders (DSM) in 1952, ethnopsychiatrists began a
serious comparison of Western diagnostic classifications to other cultural settings.
Studies used Western standards of comparison that explicitly stated that “we have
‘psychiatry’, they have ‘ethnopsychiatry;’ our diagnostic categories are ‘real’, theirs are
‘folk’ or ‘culture-bound’” (Gaines n.d.: 15; e.g., Yap 1951; Devereux 1961; Kiev 1964;
Murphy 1971). The comparative studies highlighted the role of culture and cultural
difference in the form and content of illnesses.
Anthropologists, and especially cultural relativists, reproved the role that culture played in the epidemiological studies on the course and outcome of illnesses, in particularly, mental illness. Often treated as superficial background information, cross-
cultural psychiatrists tended to see the essential biological elements surrounded by a
confusing series of cultural and idiosyncratic layers which had to be picked away in
diagnosis to reveal the “real” disease. As Geertz facetiously stated, “culture is icing,
biology cake…difference is shallow, likeness deep” (1986: 269). Psychological
anthropologists recognized the local nature and meaning of illness and pushed forward the agenda that culture matters at every level of the illness experience: in the processes of recognizing abnormal symptoms, seeking treatment, labeling and diagnosis, and in therapeutic actions taken to remedy the illness.
One theoretical outgrowth of this push was the Explanatory Model (EM). EMs
are cognitive models about a specific illness and include ideas about how illness is
defined, what personal and community meaning it has, patterns of treatment resort,
and how treatment is evaluated (Kleinman 1978; Katon and Kleinman 1980). Medical
21 anthropologist Arthur Kleinman formulated an experience-near theory about EMs from
his struggle to explain how differing concepts of disease and illness held by patients and
practitioners could be taken into consideration in the medical encounter. Kleinman
(1978) suggested that these models be elicited from individual patients, families, and practitioners in order to incorporate all participants’ experiences and beliefs in the process of negotiation and treatment. Implicit within this model was a deep concern for understanding the experience and social world that lies within an illnesses as well as acknowledging the biological processes.
Study of Biomedicine
Despite some anthropologists who felt that medical critiques were generally not appropriate for the field, medical anthropologists enlarged their scope away from their strict focus on psychiatry to study Western medicine writ large (Gaines 1992b; see
Kleinman 1978; Gaines 1982a; Engel 1984). Medical anthropologists emphasized that
Western pathology was no less culturally-constructed than others (Gaines n.d.;
Littlewood 1990; Stigler, et al. 1990). Medical anthropologists like Byron Good, Elliot
Mishler, Atwood Gaines, and Arthur Kleinman came to view biomedicine, like all professional medical systems, as culturally constructed.
For example, Good and Good (1993) critically examined the way in which
medical schools transform students into doctors vis-à-vis a reconstruction of the
medical gaze (see also Good 1994). Social psychiatrist Elliot Mishler (1981)
deconstructed the main assumptions of Western and biomedicine. Ultimately, Mishler
felt that as biomedicine adhered to the doctrine of specific etiology that was derived
22 from L. Pasteur’s germ theory, each disease is expected to have a specific genesis or cause. But underlying the cause and effect model is a process by which disease is constructed rather than found. The confusion around diagnosis is that too often clinicians and researchers have confused the concept of disease (an explanatory model) with a rigid notion of what reality is, thereby reifying the notion of diseases as real things (Mishler 1981). Building on Mishler’s assumptions of biomedicine with a specific gaze on medical systems, Gaines (1992a) offered a cultural constructivism model that outlined the manner in which biomedicine and all professional medical systems become culturally constructed. The field of medicine itself is a culturally constructed entity with its own distinct rituals and ways of seeing the world (Hahn and Gaines 1985; Gaines
1992a; Good 1994).
However, what was so clear to medical anthropologists, namely that the patient’s experience and explanatory models were just as important as the physical symptoms of the illness, was not seen as particularly important in biomedicine because of the way that discipline was constructed and taught. As mentioned earlier, central to biomedicine is the idea of a single causal agent of illness that is “discovered” through biological, empirical, and reductionist means.
The recognition that many infectious diseases were caused by microorganisms was a large impetus in the development of certain pharmaceutical drugs in the 1930’s and 40’s, namely synthetic sulfa antibiotics and penicillin. These discoveries transformed medicine as drugs increasingly became “the center of medical practice”
23 (Finkelstein and Temin 2008:22). This pharmaceutical revolution led medicine to the sciences of biochemistry, microbiology, pharmacology, genetics and others.
The birth of the biomedical model of disease as such left out the patient’s experience of illness as it sharpened the medical gaze (Foucault 1973). The medical gaze effectively reifies what is subjective to the patient into something objective for the doctor (Taussig 1980). Not only does the person transform more and more into the disease he or she is diagnosed with (e.g., “a schizophrenic” and not a person suffering from schizophrenia), but the person takes on the “sick role” and becomes a “patient,” with specific patient duties and linguistic roles to perform (Parsons 1951; Foucault 1973;
Mauss 1996). No longer a whole person, the patient and his or her role becomes that of information bearer and obedient follower rather than a partner in the medical process.
Thus, because biomedicine constructs disease as a bio-chemical entity, which puts the central focus of treatment on the body, a patient’s subjective experience of suffering and malady is often ignored or discounted by the clinician (Taussig 1980; Mishler 1984;
Kleinman 1995).
Throughout the social sciences, these powerful critiques of biomedicine mirrored the general inadequacies felt by the lay U.S. population. Consistent with the counterculture movement of the 1960’s and 70’s, there was a general dissatisfaction amongst the general public with professional medical knowledge – it was often paternalistic and dualistic and physicians focused heavily on the biological mechanisms of illness and less on the social aspects (West and Frankel 1991). When medical and linguistic anthropologists began to write about the culture of medicine in the early
24 1980’s, we received experience-near and rich productions of patient’s accounts of health, their explanatory models of disease expressed in illness narratives, how they interacted with the formal and informal medical systems, as well as the rites and initiations of medical students and other clinicians (Kleinman 1980, 1988; Mishler
1984;Good 1994).
Several medical anthropologists created methods for eliciting narratives and explaining their informant’s point of view. For example, Byron Good (1977) developed the Semantic Illness Network theory which stated that illness realities were biologically constrained as well as culturally constructed. As he compared “fright” and “heart distress” in Iran, Good illustrated that meaning was constituted as coherent networks of symbols through which experienced realities were constructed. “A meaning centered approach to medical anthropology provides a framework for the study of illness categories that is alternative to both biomedical approaches and cultural relativist analyses” (Good and Good 1982: 147).
Illness Narratives and Storytelling
One way patients and clinicians provide information to one another in the medical encounter is through storytelling and narratives (Fisher and Groce 1990). One of the most powerful forms for expressing the patient’s explanatory model and/or life experiences with the illness is through narratives. Narratives often give voice to experiences that lie outside the biomedical space and are a fundamental way we create and give meaning to our social reality (Mattingly 2000, 2008). The illness narrative or
25 story is saturated with moral, social, and cultural meaning from the patient’s lifeworld.5
“Acting like a sponge, illness soaks up personal and social significance from the world of
the sick person” – meanings from life experiences become interwoven with the long-
term experience of illness, especially chronic illness (Kleinman 1988: 31). Thus,
explanatory models are not just cognitive representations of an illness; the
psychological and social aspects of the illness shape explanatory models and the
meanings they produce.
Especially for people suffering from chronic illness, stories and narratives may be
an attempt to make an unpredictable, chaotic, “natural” disease occurrence into an
ordered, controlled, everyday life event. This excerpt from Kleinman’s Illness Narratives
reminds us how a chronic illness permeates our everyday experiences:
“The undercurrent of chronic illness is like the volcano: it does not go away. It menaces. It erupts. It is out of control. One damned thing follows another. Confronting crisis is only one part of the total picture. The rest is coming to grips with the mundaneness of worries over whether one can negotiate a curb, tolerate flowers without wheezing, eat breakfast without vomiting,…or just plain face up to the myriad of difficulties that make life feel burdened, uncomfortable, and all too often desperate” (Kleinman 1988: 44).
For people with chronic illnesses, narratives and the telling of narratives may also help
shape a person’s identity, making it possible to give coherence and meaning to events
that have disrupted and changed one’s life.
Explanatory models, as deeply rooted in emotions and cultural values, are often
difficult for patients to express, especially when they differ from others’ models, such as
5 Mishler (1984) developed the concept of the “voice of the lifeworld” as “the patient’s contextually- grounded experiences of problems and events in her life” (104). The lifeworld contrasts with the “voice of biomedicine” which is technical, scientific, and decontextualized.
26 the clinicians (Kleinman 1988). Not only is the illness experience culturally mediated,
but stories about illness are also told in a culturally specific and appropriate way (Garro
and Mattingly 2000). As such, social scientists are interested in not only what is said
during a narrative but the way in which it is told – the form of the narrative also conveys information about the narrator (Hyden 1997). In medicine, narratives are seen as something that is a distinct form of speaking, much different than what occurs during other portions of the medical encounter.
Narratives and EMs in the Medical Encounter
In a health setting, this web of meanings has great significance for the health provider and treatment of the illness. Kleinman (1988) and other medical anthropologists encourage clinicians to elicit illness narratives from their patients in order to assist people in coming to terms with the personal significances of the illness that are operating in their lives. Besides getting at the meanings of the illness, explanatory models also allow patients and clinicians to communicate and talk about their illness. By talking about these issues all participants can better negotiate a treatment plan that is mutually acceptable. The medical encounter is a prime place for such a dialogue as it sits between the patient’s lifeworld and the voice of biomedicine
(Mishler 1984; Sarangi 2004). As such, patient-centered clinicians have begun to call for a “narrative-based medicine” versus an empirically-based medicine (Sarangi 2004).
Narrative is important because lack of patient participation may cause
misunderstandings about diagnosis, prevention, and treatment. Research from outside
the social sciences also furthers the idea that there is a correlation between patients
27 talking about their explanatory models and patients’ satisfaction, understanding,
“compliance,” and health care utilization (Rao, et al., 2000). In fact, one study found that in 28 out of 35 medical encounters there was a misunderstanding between patient and clinician. Causes for the misunderstandings were that most patients had an agenda item that they did not voice or there were inaccurate assumptions or guesses from the participants (Britten, et al. 2000).
Mishler’s (1984) articulation of the importance of the patient lifeworld in medical encounters brings together the explanatory model theory, patient-centered care, and narrative medicine. Figure 1.1 represents Mishler’s model of the patient lifeworld. In this model, Mishler proposed that the voice of biomedicine, which focuses on technical concerns such as the disease process, is at odds with the voice of the lifeworld, which focuses on patient’s experiences and feelings. Mishler (1984) argued that the majority of medical encounters take place solely in the voice of biomedicine.
28 Figure 1.1 Misher’s Model of the Lifeworld (from Barry, et al. 2001)
Despite the benefits of having the patient tell his or her illness narrative, researchers studying the medical encounter found that clinicians frequently opt to take up the physical discourse of disease but do not interact with the social and cultural meanings of the disease for the patient (Mishler 1984; Kleinman 1988; Waitzkin 1991;
Britten, et al. 2000). Symptoms are similar to other social and cultural symbols; they are provided, read, analyzed, and interpreted both by the sufferer and their social network, by the interpreter speaking for the patient, and by the clinician treating them. At each
29 phase and at different levels, illnesses, and talk about illnesses, are saturated with
moral, social, economic, racial, sexual or disabling meanings. Many times these
meanings, however, are not as important as the “scientific” meaning of the disease to
the physician (Kleinman 1988).
Consider, for example, the main format of a medical encounter. Waitzkin (1991),
a sociologist and physician, highlighted the structure of the typical visit as the elicitation
of a chief complaint by the doctor, followed by a discussion of the present malady, past
history, family history, and social history. Next, the doctor performs a physical exam
and any other necessary investigations or tests and then presents a diagnosis and treatment plan. Medical residents are taught in medical school that eliciting the chief complaint and present illness from the patient are considered the most important skills a doctor may possess.
But telling an illness narrative or story is not so easy for the typical patient.
Interruptions by the clinician frequently occur during the discussion of the present illness, the phase precisely where contextual information enters the dialogue, in order to curtail “unnecessary” information in a patient’s story (Waitzkin 1991). The drive to a
correct diagnosis is very strong in every encounter and segments of the patient story
that the doctor perceives as excessive or pointless (i.e., those that are perceived as having nothing to do with arriving at a correct diagnosis) are ignored and more frequently impatiently cut off (Waitzkin 1991). Mishler (1997) hypothesized that the shape of the patient’s story, its thematic coherence, structure, and grounded ending, is directly related to the interactive roles that the patient and doctor play out. Thus, while
30 patients may be narrating their experience from the perspective of their lifeworld, doctors are interpreting symptoms from their technological perspective (Mishler 1984).
In a cross-cultural medical encounter, the patient story may hold important clues. How do Mexican immigrant patients tell their story of the present illness? Are there culturally-specific ways of communicating that clinicians need to be in tune with?
If the information provided by the patient is so important to arrive at the correct
diagnosis, why is the information provided by the patient sometimes seen as superfluous? As the physician’s authority over the disease increases, doctors become the knowledge-controllers of patient health, and the transfer and loss of power over our own bodies becomes more and more transparent (Foucault 1973). Our health and health care have additionally become commodities in the biomedical system; doctors are the providers, we are the consumers, and large profits are made by health insurance and pharmaceutical companies. Biomedicine is not just any bureaucracy and profession; “…it is a leading institution of industrialized society’s management of social reality” (Kleinman 1995: 38). Thus, because of the pressure of time, the sheer numbers of patients doctors are expected to treat due to managed care which gives incentives for clinicians to treat more patients with less resources, the gate-keeping function doctors hold, and the relegation of patient experience with their illness to “soft” science, doctors are necessarily in a position of more power over health (Dugdale, et al. 1999).
Despite the advancement of meaning-centered research, some in the medical anthropology discipline believed the focus on meaning led the primary goals of the sub- discipline astray. Browner, et al. (1988) admonished interpretive anthropologists for
31 being so against the universalist paradigms that dominated in the early century that they completely refused to explore the intersection between biology and culture.
“While this orientation has enriched ethnology, it has impoverished efforts to build comparative frameworks with which to verify propositions, determine the validity of findings in more than one society, or test hypotheses that predict generalized relationships between social, cultural, and/or ecological variables” (Browner, et al.,
1988: 689). Hahn (1985: 570) also critiqued culturally relative interpretivists for being
“overly xenocentric” to the degree that researchers would no longer account for the mistaken beliefs of their participants.
These assessments direct attention to one of the greatest theoretical problems that faced medical anthropology: that meaning-centered anthropology tended to be too culturally relative. “…the relativist [person] views the understandings of others as self- contained, incommensurate, ideational universes: across these universes there is no comparability, no common standard for rational criticism…” (Shweder and Bourne 1982:
104). Inherent tension lies within the need to establish genuine communication between social science and biomedicine, to collect data that is truly comparable and useful for applied work in settings like clinics, and the need to search for the specific cultural influences created within communities and the social systems that play a profound role in making the meaning behind the symptoms (White 1982). The goal of medical anthropology should never be to simply discover links between culture and biology as Browner, et al. (1988) advocated; nor should it be a pure relativistic reading
32 of health and illness. Rather, medical anthropologists should strive for a balance between the two extremes with a focus on making our research clinically relevant.
Critical Medical Anthropology
Finally, my research is influenced by theories from critical medical anthropology
(CMA). As a reaction against a more meaning-centered approach in medical anthropology, critical theories developed to include the examination of social structures that influence health and disease. While such structures as social class, gender, or ethnicity are culturally-constructed, they nonetheless impact determinants of health and disease. A CMA approach emphasizes the role of power, poverty, discrimination, violence, and inequality in health care systems (Singer and Baer 2007).
Early theories of both interpretive and CMA approaches in medical anthropology were at odds with one another; however, the approaches are not mutually exclusive and both inform this body of research. I see an individual patient at the clinic situated in their specific cultures, drawing upon various ethnomedical models, and having agency in their decision making and actions of obtaining health care. This same individual, though, also lives within a society with highly unequal access to health care where health care is not a right for all members. If the individual is a minority or immigrant they are more likely to face poverty, discrimination, and disparities in health outcomes
(Singer and Baer 2007).
The causes and effects of “structural violence” are often a topic of CMA research, such as the explicit connections between history, power, poverty, inequality, economic and social rights, and human rights abuses (Farmer 2003, 2004). “In short, the
33 concept of structural violence is intended to inform the study of the social machinery of
oppression” (Farmer 2004: 307). Structural violence is often embedded in the adverse
events of our research, events such as diseases or violations of human rights. Because
of this focus, critical medical anthropologists often call for anthropologists to clearly
show these linkages in our research and writing (Farmer 2004).
Specifically in the study of clinical interactions, CMA views biomedicine as a
“dynamic, contradictory expressions of overt and covert struggle between dominant
groups who promote a system that enhances control on the one hand and subordinate
groups who demand care on the other” (Singer 1995: 86). While this system of biomedicine may not be the precise reality at the People’s Clinic, where this research takes place, because the clinicians at the free clinic were volunteers who verbalized the effects of structural barriers on health, the clinicians there were necessarily working within the biomedical model.
Medical anthropologists also examine the way clinicians and patients, using different sources of knowledge, produce medical knowledge. The concept of authoritative knowledge grew out of studies of power in medical settings (e.g., Jordan
1978, 1997; Hahn 1985). Studies suggest that patients exclude their own knowledge in deference to biomedical authority, sometimes to the detriment of patient health
(Kingfisher and Millard 1998). Other research finds that patient knowledge is devalued or ignored in favor of biomedical knowledge (Jordan 1878, 1997). While certain characteristics (such as patient or clinician) affects which knowledge dominates in the
34 medical encounter, authoritative knowledge is not “true” or “correct” in any “objective”
sense, but rather is created amongst participants.
Thus, these theories contribute to an overall analysis of biomedical control
(Foucault 1975). Clinician-patient encounters are micro-level situations between
individuals. But as a social and cultural institution, biomedicine and medical encounters
are influenced by and reflect broader macro-level social ideologies, including dominant
ideologies about social class, education, and political-economic power (for examples see
Taussig 1980; Todd 1983;West 1984; Waitzkin 1991; Singer 1995).
Researchers find that many doctors, partly due to the “medical gaze” and
managed care constraints, are reluctant to discuss and even recognize circumstances in
the patient’s lifeworld (Foucault 1975; Waitzkin 1991). However, when clinicians do
converse with their patients about social problems, they tend to reinforce dominant ideologies of work and disability, sexuality and gender roles, and the “rights” of health
(Waitzkin 1991). Many areas have historically fallen under medical control and with the
addition of cultural competence models, culture may be seen as the latest subject to be
added to this list. Unfortunately, as medical management of culture and language
expand, the socio-political and economic roots underlying many patient problems
become less evident (Hirsch 2003).
Finally, critical medical anthropology also forms a basis from which to critique
cultural competence models for their incomplete views of the role of structural barriers.
As cultural competence theories gained popularity, analysis shifted away from the role
of macro-structural phenomena in health, such as living in poverty, poor working
35 conditions, environmental hazards, institutionalized racism, and an immigrant or
refugee’s migratory and pre-migratory experiences (Hirsch 2003). A CMA approach
allows for a local, contextual understanding of the experience of Mexican patients at a
U.S. health clinic as well as their relationship to broader national and international
systems (biomedicine, immigration politics, political, and economic systems) (Chavez
2003; Hirsch 2003; Sobo 2009).
III. Linguistic Anthropology
Anthropologists who study language view it as a set of symbols and practices
that represent social and cultural worlds. Linguistic anthropology examines language
through the lenses of anthropological concerns and has at its core such studies as the
transmission of culture, forms of social organization, and how language plays a crucial
role in mediating our ways of being-in-the-world.
Arguably, the linguistic study of doctor-patient encounters and communication
has yielded needed data about a situation that nearly every individual has experienced.
This process of sickness and wellness is rife with emotions, cultural patterns and
expectations, and powerful relationships. The participants involved in this encounter,
be it the clinician, patient, family member or medical interpreter, enact specific
sociolinguistic roles which often point to wider social and institutional actions and rules;
speaking produces social action.
It is these behaviors, rules, and outcomes that this section will address with a
focus on the unique situation of cross-cultural and cross-linguistic medical encounters.
36 The section will provide a brief history of the research and methodologies of sociolinguistics and linguistic anthropology, I will examine the area of doctor-patient communication, and the use of interpreters in cross-linguistic encounters.
Sociolinguistics and Linguistic Anthropology
The two academic disciplines that most often study medical discourse are sociolinguistics and linguistic anthropology. Despite sharing certain ideas, theories, and methods they constitute two related but separate research disciplines.
Linguistic anthropology, the older of the two sub-disciplines, grew out of early
study and documentation of American Indian languages and cultures by Kroeber, Sapir,
Whorf, and other anthropologists in the late 1800’s and early 1900’s. While these
scholars thought of themselves as linguists primarily and chose the name
“anthropological linguistics,” it was the work of Gumperz and Hymes in the 1960’s which
changed the direction and specificity of the sub-discipline (Duranti 2001). Their resolve
to broaden the interest of language beyond the focus of micro-level grammatical
structure of communication is evident in Hymes’ landmark essay Toward Ethnographies
of Communication (1964). He wrote, “…an ethnography of communication must take as
context a community…it is not linguistics, but ethnography – not language, but
communication – which must provide the frame of reference within which the place of
language in culture and society is to be described” (Hymes 1964: 3). Instead of
describing talk as something that directly reflects the beliefs and values of a community
or speaker, Hymes’ important insights show rather, that we should concentrate on
situations of speaking, such as communication during a medical encounter.
37 Sociolinguistics emerged in the 1960’s as the study of linguistic forms related to
the social context of their use. Gumperz, also a pioneer in this field, used qualitative
methods to understand language contact (Gumperz 1968). Labov provided an empirical
basis for the study of language change that began in urban centers based on
quantitative analysis of recorded interviews. Labov-style research has been known as
quantitative, macro or urban, whereas Gumperz-style sociolinguistics has been known
as qualitative, micro, and interactional (Duranti 2001).
Despite Hymes’ attempts to keep sociolinguistics and linguistic anthropology
under the same umbrella, they generally form a split around their differences in
methodological choices (e.g., ethnography) and theory (Duranti 2001). First, the
treatment of sociological and cultural concepts such as race, class, gender, and age as static independent variables by sociolinguists is not accepted by anthropologists who recognize these concepts as culturally-constructed and fluid. Second, inclusion and attention to context as a changing frame that affects speech itself is generally absent in sociolinguistics. Third, sociolinguistics’ reliance on the transcript data alone for analysis is problematic for anthropologists who use ethnographic methods to capture conversation as an interactional achievement (Ainsworth-Vaughn 1998).
These differences often align themselves along two separate methodological paradigms, both of which seek to understand how language creates and recreates meaning through discourse. Conversation analysis (CA), pioneered by sociolinguists
Sacks (1984) and Schegloff (1991), focuses on sequential organization of talk and how that organization creates meaning in a conversation (Freeman 1987b). For
38 conversational analysts, the varieties of sequential organization – the turn-taking system for managing the construction of the interaction, allocation, sequences for entry into and exit from conversation, the pauses or hesitations, and the intonation of utterances
– make up the structure for encounters and thus comprise the bulk of the data. Any additional information about the context from which the discourse occurs is seen as secondary and to the extent context enters into the analysis, it must be proved that contextual cues are linked to the participant’s recognition of the categories as integral to the events being studied (Schegloff 1991; Zimmerman and Boden 1991).
Alternatively, linguistic anthropologists frequently use discourse analysis (DA) as their main methodology. DA does not renounce CA’s micro-level analysis, but suggests that if researchers want to understand the role of language in people’s lives, they must go beyond the study of grammar to the world of social action. It is within this cultural fabric which utterances are shaped and meanings produced. Cicourel (1987) argued that ethnographic material, participant attitudes, and patterns of social organization are constitutive of talk and should be included in discourse or conversational analysis.
“Language and other social practices are interdependent. Knowing something about the ethnographic setting, the perception of and characteristics attributed to others, and broader and local social organizational conditions becomes imperative for an understanding of linguistic and nonlinguistic aspects of communicative events” (Cicourel
1987: 218).
Both methodological paradigms strive to maintain balance between macro- and micro-analyses to discover how the organization of talk enables or constitutes the
39 structures of social action (Zimmerman and Boden 1991). The tension between CA and
DA results from inherent differences concerning what is being studied and what should
be contained in the final analysis. DA takes talk and the texture of talk as significant in
and of itself. Context may not always significantly impact the shape, form, or trajectory
of the conversation, but it is almost impossible to analyze the meaning of the interaction
without invoking contextual details (Cicourel 1987; Ainsworth-Vaughn 1998).
The Search for Meaning and Reality in Language
Thus, linguistic anthropology today is more than a study of grammar; it is the
understanding of the crucial role played by language in the constitution of society and
cultural representations. To pursue this goal, linguistic anthropology adopted tenets
from ethnomethodology and directed their gaze into the discourse of everyday social
life, like language socialization, political events, institutional discourse, and doctor-
patient communication (Zimmerman and Boden 1991; Duranti 1997; Gumperz 2001).
Ethnomethodological theories shape the idea that discourse, whether it is of conversational or interview type, is created interactionally between or among participants (Garfinkel 1967). The key then is not to search for the “real” meaning of an expression or utterance (which would be quite impossible), but rather to try and determine what a speaker intended to convey in a specific message and how meaning is created between the speaker and hearer (Gumperz 2001).Together with constructivist approaches that claim that cultural and social worlds are created and recreated over time through embodied and disembodied communications (Gaines 1991, 1992), these theories point to the focus on “communicative practices as the everyday world site
40 where societal and interactive forces merge” (Gumperz 2001: 218). To interact is to
engage in a process of negotiation, both for the speaker to say clearly what they mean
and monitor how they are perceived and for the listener to infer what was intended.
Thus, meaning is created in situ because in general, words can never be precise
and detailed enough to convey a speaker’s true meanings; listeners must make sense of,
or use “practical reasoning” to fill in what is left unsaid (Goffman 1981; Grice 1989).
Individuals frequently base meaning on the “surface form” of a message and rely upon
socially and culturally constructed rules of conversation to interpret the underlying
meaning (Gumperz 2001: 216). These rules comprise extra-linguistic ways of
communicating, such as frames, tone, pitch, rhythm, and so forth (Goffman 1981).
Interpretation of these behaviors is as equally important as interpreting the meaning of the words correctly. No utterance can be made without these signs and because they are indirect and often unconscious ways that speakers convey and interpret meaning, linguistics argue that attention should be paid two-fold to these signs in cross-cultural
communication (Gumperz 2001).
“Mis”-communication and Linguistic Competence
Because there are seemingly multiple ways our talk becomes problematic in
interaction, miscommunication comprises a large topic of research. Yet there is no clear
or uniformly agreed upon definition of what constitutes successful or unsuccessful
communication; miscommunication cannot be automatically equated with failed talk
(Freeman 1987b). Miscommunication, as a slippery term, is applied very loosely to any
sort of problem that arises interactionally (Coupland, et al. 1991). What is different
41 about good communication verses bad? How does a researcher define such subjective
variables like appropriate, efficient, or satisfying communication?
Miscommunication is a frequent topic of research in cross-cultural as well as
medical communication not only because of the difficulties in literal translation across
languages, but also because individuals bring with them unique socio-cultural rules
about interaction, such as who has the right to ask and answer questions, who can
speak for the patient, when is it appropriate to remain silent or joke, participant’s roles
(such as patient or doctor), and cultural patterns for certain discussions (Hymes 1972;
Briggs 1986). However, it is a mistake to assume all conversations between different
language speakers would result in a mismatch of rules and competencies and, hence,
result in miscommunication.
At the heart of miscommunication theories is an awareness that individuals of a speech community share conversational rules about interaction. Chomsky (1965) and
Hymes (1972) both provided theories about “linguistic competence.” However, Hymes argued that the early separation between competence, or the knowledge of language,
and performance, or the use of language, was problematic. Starting from a
commonsense notion of competence, Hymes believed that speakers are “competent”
not only when they have the knowledge of the grammatical rules but also when they have the knowledge of how to use them appropriately. To be a member of a particular speech community, one must know, for example, when to speak and when not to speak,
how to be polite, how to request or offer collaboration, and how to sound calm,
surprised, interested, and concerned. Hymes’ definition replaced the Chomskian notion
42 of competence with the notion of communicative competence which included the
knowledge of language and the ability to use it (Hymes 1972).
With Hymes’ definition of communicative competence, we can see why cultural
competence in medicine must include not only a translation of the language itself but,
for example, the ability to know how to use appropriate visual cues, slang, or how to negotiate a treatment plan. I will next examine how linguists study medical discourse beginning with a historical overview of theories and methodologies and concluding with specific research data that will ground the findings and significance of this dissertation research.
IV. Medical Communication
Medical interaction and discourse has steadily gained the attention of social
science researchers in the last 50 years. For medical and linguistic anthropologists the
attention to medical discourse is largely due to three main factors: (1) the ability of
research data to positively influence the medical process/community; (2) the specialized
forms of interaction and unique sociolinguistic roles for categories of doctor, patient, nurse, and interpreter within the medical encounter; and (3) the prominent role of
culture in health and illness. Research not only advances linguistic knowledge and
methods, but is also beneficial for studies of medical anthropology and bioethics and
can be applied to produce better medical and patient education and treatment
decisions.
43 Medical interactions in the U.S. often contain asymmetrical power relations, power struggles, and misunderstandings causing real changes in diagnosis, treatment, and follow-up care (Ainsworth-Vaughn 1998). What are some of the ways in which clinicians and patients implicitly and explicitly exercise their control and how can we, as researchers, witness and operationalize these interactionally created power dynamics?
How might a clinician alter their communication strategies with regards to information sharing, negotiation, and treatment decisions in an encounter with an immigrant patient who speaks limited English? How should researchers conceptualize the role of a medical interpreter?
Doctor-Patient Communication
Early scholars believed that asymmetrical roles were essential to the doctor- patient relationship. For example, Parsons (1951) advocated normalcy in the unbalanced relationship because it is the doctor and not the patient who is responsible for restoring health; patients are in a position of dependency for health care, doctors possess specialized knowledge and technical qualifications, and doctors’ professional prestige gives them more social capital and thus control over their patients. However ardently Parsons supported this role, scholars began to move away from believing asymmetry in this relationship should be standard practice.
Early research on doctor-patient communication from the 1960’s found that patients were unhappy with the lack of information from their doctors and, in fact, this was the least satisfactory aspect of their health care (West and Frankel 1991). One wave of subsequent research tried to correlate the amount of information patients
44 received to better health outcomes. Studies from the late 1960’s to mid- 1970’s looked
at the amount of information given in a visit and how patients obtained that
information. However, this research assumed that patient’s needs, wants, resources,
and abilities were constant and evenly distributed. Researchers did not take into
consideration that if patients required different amounts of something (e.g.,
information), then it was only logical for them to behave differently. And if doctors
perceived these differences then it was logical for them to respond differently as well.
As expected, correlations between patient satisfaction and the amount of information
given to them in a typical visit did not prove significant. Researchers began to look at
exactly what patients were told (West and Frankel 1991).
These studies revealed one of the most prevalent complaints in doctor-patient
research today, that doctors used a high amount of medical jargon in their communication that was not understood by their patients. Not only were technical terms misunderstood by patients, but one study found that even names of common illnesses (varicose veins, cardiac arrest, and diabetes) were misunderstood (Shuy 1983;
West and Frankel 1991). Korsch, et al. (1968) reported that of 800 patients, more than
half said that their doctor sounded “Greek,” fewer than 5% of patients said their doctor
was friendly or sociable, and more than 25% said their chief concerns were never
mentioned. Non-compliance to the treatment plan was found to be a result when
patients failed to receive explanations as to the cause of their illness.
Early conceptualizations of medical communication used a linear, conduit model
of straightforward transmission of information from sender to receiver (West and
45 Frankel 1991). One assumption of this model was that good communication equals
clear communication. Jargon was seen as negative to the receiver, something that
prevented the patient from understanding the transmission message. A second
assumption of the conduit model was that causes of miscommunication could be
explained as a function of the individuals involved in the interaction. Researchers
looked for characteristics of better senders and receivers. “Problem patients” were
identified as alienated, those whose sense of power was associated with their lack of
knowledge about their illness (West and Frankel 1991).
Gender, age, and socioeconomic factors were also scrutinized as findings
demonstrated that less educated patients and those who had low socioeconomic status
(SES) were less knowledgeable about preventive care, medical terms, and were less
likely to listen to their physicians. Better educated patients were found to be less willing
to yield to the time pressure of the doctor and were more active participants in the
interview process (Hein and Wodak 1987).
But just how these factors played out in real interaction was less obvious.
Results of two important studies undermined the conduit model assumption that miscommunication could be traced back to characteristics of senders and receivers as individuals. Instead of previous hypotheses that doctors told the same things to everyone based on the doctor’s personal characteristics, Davis (1963) observed that doctor’s perceptions of patient’s SES altered what doctors said to patients and Roth
(1963) found that the way patients presented themselves influenced the kinds of information they were getting.
46 Thus, a narrow view of language and communication which stressed generic
strategies failed to take into account individual characteristics or resources that
participants may have (Sarangi 2004). The fact that early studies on medical
communication produced contradictory results highlighted essential questions about
research methodology and measurement (West and Frankel 1991). Fundamentally,
these studies did not capture the context of communication. The CA approach used by such studies utilized quantitative measures of variables and did not often illuminate what prompted a phenomenon to happen (e.g., a patient question) and what happened after it occurred (West and Frankel 1991). Discourse, often complex ambiguous, cannot
be dealt with by quantification alone. “Coding cannot capture the multifunctionality
and ambiguity with which speakers negotiate, leaving open multiple possible
interpretations” (Ainsworth-Vaughn 1998: 8).
A methodological shift occurred in the 1980’s and researchers began to examine
context and include verbatim transcripts of the recorded discourse with their
publications. As researchers reflected on the role of context in determining meaning for participants, they adopted strategies to allow the examination of communication across contexts. For example, Shuy (1974) presented an overview of sources of communicative difficulty at varying levels (social, cultural and linguistic) and West (1984), Todd (1983) and Fisher (1986) analyzed turn taking and interruptions to examine the negotiation of power by doctors to patients of different SES. Wodak (1996) documented how institutional members of an outpatient ward in a large hospital engaged in the organization of reality through symbolism of myths, stories, legends, jokes, and rites and
47 the consequences of medical myths like having enough time for patient treatment.
Lastly, Cicourel (1983) looked beyond verbal data to written texts in order document how information and meaning is abstracted from the patient, translated through the doctor, and recorded in the medical chart.
Power, Negotiation, and Deference
Because discourse, and the rules of discourse, reflects broader social issues and structures, one research theme in the medical communication literature remains constant – that is, how power is performed and communicated and how features of larger social structures can be discovered through analyses of discourse. Typically, power is indexed by such linguistic phenomenon as types of doctor-patient talk: questions, interruptions, topic transitions and control, information sharing, jargon, and frames of speaking. Analysis shows that participants exert power in an interaction through turn by turn processes, constructed partially through actions that control the emerging discourse, such as interruptions (Ainsworth-Vaughn 1998).
Doctors, by virtue of their position within the social structure of the medical institution, hold a position of authority that the patient role does not encompass
(Foucault 1973; Mauss 1996). In doctor-patient discourse, the doctor may exercise more authority over the encounter and interview due to the expertise a doctor has over the disease or ailment. Besides the role of “doctor,” other variables that correlate with power are the gender, age and ethnicity of the doctor, usually a white male, and gender, age, ethnicity, and education of the patient (Ainsworth-Vaughn 1998; Fisher 1998).
While a definition of power as dominance is applicable to doctor-patient
48 relationships and communication, some researchers have defined power in more
neutral ways. Patients are often described as passive in the medical encounter,6 but a minority of researchers document the ways in which patients claim power through verbal and nonverbal communication. For example, Ainsworth-Vaughn (1998) identifies
one form of power as the ability to implement one’s agenda. If a patient is able to bring
up his or her main issues during an encounter yet only asked 10% of the total questions,
it may be mistaken to assume the patient did not have any power over the visit. The
focus on patient power does not deny that physicians largely control the communicative
process during medical encounters, but it does stress that this is not the automatic
effect of institutional forms; asymmetry must be formed interactionally by both parties
(ten Have 1991).
The following overview will briefly highlight the common linguistic phenomenon
that researchers focus on when examining power and (mis)communication. These
communication strategies will be used later in the dissertation to examine power and
negotiation at the People’s Clinic.
Jargon
One way miscommunication can arise is through the use of jargon. Doctors,
because of their specialized knowledge, understand and communicate about health and
disease in scientific medical language. Medical terms also offer a more precise way to
talk about the body and disease processes. However, there is often no attempt on the
6 Findings of patient passivity are partially thought to be due to the situations in which research occurs. Medical communication research is often completed at a free clinic or university-related research hospital, with doctors and patients with no prior history, looking at isolated visits rather than sequential encounters, and without female doctors in the sample (Ainsworth-Vaughn 1998).
49 doctor’s part to translate medical jargon to more easily understood terms for the
patient (Shuy 1974). In fact, some researchers believe that doctors and patients can
engage in a kind of “communication conspiracy” where doctors speak as though their
patients are medical professionals and patients nod their head and act as if they
understand what is being discussed (Roter and Hall 1993: 93). The result of such a conspiracy is a great deal of miscommunication and misunderstanding for all parties involved, and, in extreme cases, doctors and patients may miss out on important life- saving information.
Shuy (1974) studied the discourse between black inner-city patients and white middle class doctors and specifically wanted to know the degree to which patients felt like they must communicate with doctors in doctor language. Most of the medical encounters Shuy observed and recorded were conducted in “doctor talk” and he noted that most serious breakdowns in communication occur at both ends of the continuum.
The post-visit questionnaire given to 86 patients revealed that 41% said they sometimes
felt the doctor didn’t understand their problem, 38% felt that clinicians used words that
were difficult to understand, and 38% thought it was difficult to explain things to the
doctor. These are not startling findings, especially coupled with more recent findings
that in nearly half of 100 visits observed, doctors used words like tricyclics, stool guiac,
creatinine, and tempromandibular joint without following up with an explanation (Roter
and Hall 1993).
50 Questions
The role of questions is three-fold: (1) questions function as a primary method of
acquiring information; (2) questions claim the right to control the topic and determine who will be the next speaker; and (3) patient questions often signal to the doctor that
the patient is a competent and active participant in their health and treatment plan.
Particular types of questions, for example open ended or closed, may also transform the
topic of discourse. Medical encounters tend to be highly asymmetrical interviews
consisting primarily of doctors asking questions and patients answering them (Todd
1983). The observation that in general the speaker who has the power asks the most
questions has been found not only in medical encounters, but also in attorney-witness
and teacher-student discourse (Ainsworth-Vaughn 1998).
Rhetorical questions may also be used by both patient and doctor to mitigate
power (Ainsworth-Vaughn 1998). Because rhetorical questions often do not expect an
answer, they may not pose a threat of control over the discourse in the same way a true
question would. For example, in a possibly challenging but face saving rhetorical
question posed in Ainsworth-Vaughn’s (1998) research, a patient asked about side
effects from her medication. When the doctor did not answer, she stated, “Who can
answer that. Apparently nobody.” Consider the implication and direct confrontation
that might have ensued if the patient had asked “Why don’t you know about the side
effects of a medication you are prescribing?”
Context also appears to make a difference in the number and kind of questions
asked by the patient. West (1984) studied 21 encounters in a clinic whose patients were
51 primarily of low SES. All 18 doctors were white and 14 were male. Using the narrow
adjacency pair definition, West found that 91% of questions were asked by the doctor
and only 9% by the patient; in 48% of visits, patients asked fewer than 2 questions.
Conversely, Ainsworth-Vaughn’s (1998) data taken from a private setting in which all
patients were white, with equal numbers of male and female doctors, and from which
patients and doctors that had an ongoing therapeutic relationship, found that patients
can ask up to 39% of all questions. Ainsworth-Vaughn also suggested that this high
number may designate a more “conversational” encounter verses a medical interview.
The gender of both the doctor and patient has a significant effect on question
asking. Patients in Ainsworth-Vaughn’s (1998) study, whether male or female, asked more questions when the doctor was female (an average of 11 questions per visit).
However when the doctor and patient were both male, patients asked on average only 4
questions per visit. This suggests that female physicians may exhibit a more egalitarian
communicative style that allows patients to clarify, discuss, or ask for more information.
Overlaps and Interruptions
Conversing with another person and relaying information involves taking turns in
speaking. Ideally, the listener will begin his or her turn after the speaker is finished.
However, not all discourse follows this egalitarian model and more often, the listener’s
talk will overlap or interrupt the speaker. Not all overlaps of speech are interruptions;
interruptions are defined as an utterance which disruptively overlaps or cuts off the other speaker (West 1984; Ainsworth-Vaughn 1998). As interruptions, these utterances
attempt and sometimes succeed to cutoff a speaker’s point thereby violating his or her
52 right to finish a thought when in control of the conversation. Overlaps tend to occur
because of errors in topic transition timing (the listener begins to take his or her turn
because they thought the speaker was finished) or because the listener wants to show
that he or she is following the conversation by listening affirmations (i.e., “mmhmm”)
(West 1984). The latter form of overlap may also be described in the literature as a
“back channel” utterance.
Turn-taking in medical interaction usually involves the doctor taking more turns in speaking as he or she obtains the information for the correct diagnosis and treatment. West (1984) examined the frequency and outcome of overlaps and interruptions in 20 medical encounters. Doctors interrupted patients 126 times or 67%; patients interrupted 62 times or 33%. Interruptions, however, displayed further patterned asymmetries in her study according to the patient’s race and gender. White male patients seeing a white male doctor interrupted each other equally, but white male doctors interrupted white female patients 1.8 per every 1 patient interruption and a ratio of 4.4 to 1 with black female patients. “To ask where a patient is feeling pain, how often, when, or under what conditions is justified by, even required for, precise diagnosis of a problem. However, when these inquiries cut off what the patient is saying…then the physician is not only violating the patient’s rights to speak, but he is also systematically cutting off potentially valuable information on which he must himself rely to achieve a diagnosis” (West 1984: 61, emphasis in original).
While doctors on average took more speaking turns, West’s (1984) data concluded that when the doctor was a woman, male patients interrupted far more
53 frequently than when the doctor was male. Additionally, female doctors’ interruptions
only accounted for 32% of all interruptions during the visit relative to the patients who
claimed the other 68%. West contended that when the doctor is female, the
sociolinguistic rules of gendered speaking may be more influential than the role of doctor.
Medical Interpretation
Language barriers affect the provision of quality health care in many parts of the world. In the U.S., the number of individuals who speak a language other than English at home has more than doubled over the last two decades, and over four million households have been termed “linguistically isolated” (Shin and Bruno 2003). This trend has coupled with far slower increases in the number of bilingual and multilingual health care providers (Stoddard, Back, and Brotherton 2000), greatly challenging health care institutions to accommodate patients and families with limited English proficiency.
Research has associated language barriers with the increased potential for misdiagnoses and inappropriate treatment, the need for repeat visits, inadequate informed consent, and dissatisfaction in the quality of communication and care among patients and providers, among other outcomes (Elderkin-Thompson, et al. 2001; Flores, et al. 2003;
Simon, et al. 2004; Dysart-Gale 2005). These findings intensify the need for ethnographic study and understanding of language barriers in health care.
In the U.S., policy making efforts to improve access to language services have been stepped up in recent years. Specifically, the Office of Civil Rights and the Office of
Minority Health, together with President Clinton’s Executive Order 13166 in 2000,
54 added pressure to prior regulations stating that all federally funded health care
programs must produce a clear and written plan of action detailing steps to ensure
access for non-English speaking patients and their families (Perkins 2003). Institutions
have responded to these laws in a less than formal and often unorganized fashion.
Some have developed interpreter programs and supported community-sponsored interpreter pools while others have no formal training programs for their interpreters and frequently utilize ad hoc interpreters such as friends and family of the patient as well as janitors, nurses, or other hospital personnel (Putsch 1985).
A National Public Health and Hospital Institute (NPHHI) survey conducted in the mid-1990’s from 83 hospitals across the U.S. found that ad hoc interpreters made up the majority of interpreters at these institutions. Clinic/hospital employees can frequently interpret for a major portion of their workday and yet receive no additional compensation for their extra duties. Duel work roles can lead to conflict and stress
(Haffner 1992; Wadensjo 1998). Using untrained interpreters can also result in frequent errors of interpretation, including omissions, additions, or substitutions (Baker, et al.
1996; Baker, et al. 1998). For example, family members tend to respond to questions for the patient without interpreting them, they volunteer their own information, and often do not translate patient comments (Haffner 1992). In a cross-cultural situation as well as a bilingual one, it is not difficult to imagine that family members may not correctly interpret information that they deem inappropriate to share with strangers.
However great the need for interpreters, there is often little to no standardization in training or competence, nor are there instructions to health care
55 providers on how to best use interpreter services. Less than ¼ of the surveyed hospitals
by the NPHHI provided any training for their staff and only 9 hospitals trained their
volunteer interpreters. When clinicians are not trained to use interpreters, they often
make mistakes; for example, they have been found to look at the interpreter and not
the patient, decreasing the sense of connection and rapport between doctor and
patient (Baker, et al. 1998; Abbe, et al. 2006).
One group of physicians looked at how interpreter use correlated with patient
satisfaction. Baker, et al. (1998) used a satisfaction scale to assess language barriers as
well as clinician friendliness, respectfulness, concern for the patient as a person, time
pressure, and comfort at one large California hospital. Patients who did not need interpreters and spoke Spanish with the doctor (n=237) had the highest satisfaction; patients who used interpreters (n=120, 88% were ad hoc interpreters) rated their provider as less friendly, less respectful, less concerned for them as a person, and less likely to make them feel comfortable; patients who needed an interpreter but did not have one (n=100) not surprisingly had the lowest satisfaction scores for all items (Baker, et al. 1998). The authors also found that patients who used an interpreter were less knowledgeable about their discharge diagnosis than patients who communicated directly with their doctor and that only 38% of patients who did not have an interpreter when they needed one stated that their understanding of their diagnosis or illness was good to excellent.
56 Errors in Interpreting
Many variables can affect the standards of accuracy and completeness:
interpreter and clinician level of training and competence, nature of the environment,
duration of the encounter, and the speaker’s communication behavior and preferences.
The last point is especially important in influencing accuracy and completeness;
clinicians often use medical jargon or speak in lengthy dialogue making it difficult to
translate.
Clinicians are most concerned with the accuracy of interpretations above other
issues (Abbe, et al. 2006). Because of this importance, the majority of research on medical interpreting reports the kinds of errors interpreters makes. For example,
Flores, et al. (2003) examined the frequency, categories, and potential clinical consequences of errors committed by interpreters and compared the quality of interpretation by professional hospital interpreters versus ad hoc interpreters. Thirteen patient visits were audiotaped in a pediatric clinic; medical interpreters were present in
6 of the 13 encounters and ad hoc interpreters were used in 7. Errors were classified errors into 5 categories: omission, addition, substitution, editorializaiton, and false fluency (i.e., used an incorrect word or phrase). Interpretive deviations from medical jargon, contextual clarifications or cultural negotiations were assumed to be part of the interpreter role and were not counted as errors.
Surprisingly the authors found that there were no statistically significant
differences between hospital and ad hoc interpreters with regards to the number of errors made, an average of 31 errors occurred per visit. Omission of information
57 counted for 52% of all errors and was the most common error followed by false fluency
(16%), substitution (13%), editorialization (10%) and addition (8%). The authors
reported a significant correlation between the type of interpreter and errors that had potential clinical consequences. Errors made by ad hoc interpreters were significantly more likely to have potential clinical consequences than those made by hospital interpreters (77% versus 53%). For example, when an 11 year old sibling was used, 84% of the 58 errors she made had potential clinical consequences (Flores, et al. 2003):
Pediatrician: So he vomited five times between 1:00 and 3:00? And after that he hasn’t thrown up? Interpreter: That since that time he has not vomited? Mother: No. Now he has like pain in the ear and so on. Interpreter: Yes, he havin’ pain. Mother: Tell her [the pediatrician] that he has something on his mouth. Tell her. [Silence] Pediatrician: How old is he now? Interpreter: Three.
Most research on child interpreters cites numerous errors in translation. Using child interpreters in a medical setting may additionally place them in a higher power role and give them access to more information than the child would otherwise have in that culture or family (Haffner 1992).
Elderkin-Thompson, et al. (2001) focused specifically on the accuracy of nurse- interpreters, the nature of the inaccuracies, and the behavioral process that promoted the occurrence of the errors. Language errors were operationalized as a lack of mention of cultural practices like dietary habits, ethnic beliefs, use of native healers and semantic problems like medical jargon, paraphrasing, or editing mistakes; interpersonal conflicts were defined as a lack of trust toward the patient by the doctor or interpreter and
58 conflicts over control of the discussion direction. Of the 21 visits they recorded, 11
contained major interpreter errors.
The authors focused on the processes that foster error development and
prohibit their correction (Elderkin-Thompson, et al. 2001). They found that significant errors mainly developed due to 4 specific processes. First, when new information appeared contradictory in the patient’s history and story, these nurse/interpreter- doctor teams dismissed the contradictory information without verifying its accuracy.
Second, nurses sometimes misinterpreted comments to provide clinically relevant information they thought the doctor wanted to hear (see also Davidson 2000, 2001).
Third, when Spanish speaking patients differed substantially with the interpreter on social prestige and power, the patient’s comments sometimes were ignored, the patient was not asked for clarification, or the nurse spoke for the patient. And lastly, the nurse interpreter sometimes avoided cultural idioms from the patient and literally interpreted cultural beliefs as symptoms thereby making the patient sound nonsensical.
V. Introduction to Dissertation
Because of the popularity of cultural competence as a panacea to health
inequalities, my dissertation research is grounded in the position that we must take a
moment to identify, rather than assume, how cultural differences may become problematic in the delivery of services by examining interactions in the medical encounter itself. Medical anthropologists have documented and researched cultural
health beliefs and explanatory models about illness (e.g., high blood, nervios, falling out)
59 and have indicated that cultural differences between doctors and patients have the potential to adversely affect the delivery of health care (Clark 1970; Jenkins 1988;
Chavez, et al. 1995; Browner, et al. 2003). Scholars also highlight related obstacles such as low patient health literacy, low education levels, low socio-economic status, poverty, and job-related hazards. Less is known however about whether and in what manner cultural differences are recognized in clinical encounters, how they may be dealt with, and which clinical strategies may mitigate the impact of cultural or linguistic barriers
(Brach and Fraserirector 2000).
Further, if illness narratives and information from the patient’s lifeworld represent a primary way contextual, emotional, personal, and cultural health information is provided to the clinician, and we hypothesize that this information may be more important in cross-cultural and cross-linguistic medical encounters (Gumperz
2001; Kleinman and Benson 2006), how then do patients and clinicians take up this discourse? Do clinicians, who frequently utilize strategies such as interruptions to mitigate or cut-off patient stories, make efforts to seek out explanatory models and other health information from patients in a cross-cultural setting? What kinds of information do immigrant and minority patients deem important enough to provide to clinicians when given the linguistic space to do so?
In order to understand how clinicians and patients from different linguistic and cultural background communicate in a medical encounter, I conducted 24 months of fieldwork at the People’s Clinic, a free clinic in a large metropolitan city in Texas.
Chapter two provides details of the ethnographic setting, the organizational structure of
60 the clinic, as well as the study design, methods, and analysis. The chapter additionally
describes characteristics of the clinician and patient population, recruitment strategies,
and my roles at the clinic.
Chapter three begins the exploration of cultural competence definitions,
theoretical models, and how culture was understood at the People’s Clinic. Observation
of the clinic’s day-to-day practices, including participant observation of the nursing
student clinical program and clinician interviews, provided ethnographic data about how
clinicians and other staff performed cultural competence at the micro, encounter level
and at a macro, community level. The nursing student clinical program provided a
means with which to understand how new clinicians were taught to be aware of the role
of culture and macro-structural barriers in this patient population.
The two case studies in Chapter four supply a “thick description” of the way
patients, interpreters, and clinicians interact in a medical encounter (Geertz 1973).
Specifically, the case studies illustrate the dynamics of a cross-cultural and linguistic
clinical encounter, how treatment decisions were made from the information shared
within the encounter, and the methods used to exercise power and control to either
prevent or encourage information sharing. The case studies articulate how major
communication strategies, such as questions, interruptions, or illness narratives, work
simultaneously with one another in order for participants to fulfill their sociolinguistic
roles of getting and providing health care.
Chapter five uses the concepts from chapter four and applies them across the 30 recorded medical encounters to examine the content of patient narratives or
61 explanatory models. In a cross-cultural encounter, are patients more likely to discuss
“cultural” health beliefs? If cultural health beliefs are discussed, how do clinicians interact with them and how does the information shape the medical encounter?
Chapter six brings to light the role of the medical interpreter. As interpreters are seen to bridge linguistic and cultural barriers to health care for immigrant and minority patients, their role and contribution as a major participant cannot be disregarded. This chapter highlights the various roles that the interpreters held at the clinic, the communication processes that fostered accurate interpretations, and how interpreters shaped the course of the medical encounter.
Finally, Chapter seven concludes the dissertation, where I reflect upon the scholarly as well as applied contributions of this research.
62 Chapter Two: The Setting and Methodology
This study is based on 24 months (July 2006-July 2008) of linguistic and ethnographic field research at the People’s Clinic,7 a free clinic in a major metropolitan area in Texas. I chose to conduct my dissertation research at the People’s Clinic because early communications with the clinic medical director indicated that the clinic was particularly focused on culturally aware practices with their largely Mexican immigrant patient population. The medical communication literature is rife with hypothetical examples of what not to do in a medical encounter but rarely are there real examples of exemplary practices, especially in a cross-cultural setting. Additionally, the clinic medical director was also a professor of nursing, and recognized the value of research on medical communication.
Because of a desire to explain the relationship between micro-level communication processes and macro-level cultural, social, and political processes, this research situates the medical encounter within a broader context of the clinic and community practices. Specifically, this project provides an ethnographic description of a clinic that is focused on cross-cultural and cross-linguistic health care with minority patients and their surrounding community. It adds a triangulated layer on top of most cross-cultural communication projects because, rather than taking one level or group of participants as my sample, I included all players in the medical encounter – patient, clinician, interpreter, and clinic volunteer staff.
7All names in this publication are pseudonyms.
63 I. Research at Home
There is often an unspoken boundary in anthropology between conducting field
research at home and abroad. From one critical perspective, the anthropologist who
conducts research “at home” is a “native,” at risk for losing scientific objectivity and
methodological rigor. Anthropologists firmly rooted in the belief of the necessity of
external fieldwork experience see anthropology at home as a “soft” research experience
(Peirano 1998). However, in deconstructing this perspective, the concept of
“nativeness” is largely attached to one’s cultural or ethnic belonging. Being an insider
involves two processes, identifying and knowing oneself, and the perception and
acknowledgement of others as an insider (Greverus and Römhild 1999).
As an Anglo-American, I was not a native or insider of the main cultural or ethnic
groups I studied, namely, clinicians and Mexican immigrants. While I had previous
experience as a mental health clinician, I entered the field as an anthropologist, carrying
with me notions of the emic and etic perspectives, subjectivity and objectivity, and the
important of reflexivity. The approach, and not the subject matter or location, is what
defines the anthropological endeavor (Sobo 2009). Far from only a discipline of the
“exotic,” anthropology is conceived of as a certain relationship between observer and
observed (Lévi-Strauss 1961, quoted in Peirano 1998).
In this research, a process of continual reflexivity and militant field note writing aided a constant dance between subjectivity and objectivity. While I did not have to navigate new rituals of an exotic tribe or sleep in a grass hut, I did undergo my own rites of passage and felt the need to examine my research community with new eyes. I spent
64 considerable time learning the languages of biomedicine and medical Spanish of the clinicians and Mexican participants respectively. Even though I grew up less than 40 miles from the People’s Clinic, both of these groups were as foreign to me as the refugees from Burma I met during the latter part of the project.
Native anthropology additionally represents a decolonizing pedagogy in a discipline whose early academic strength was devoted to description and analyses
“carried out by Europeans, for a European audience – of non-European societies dominated by European power” (Asad 1973:15, see also Said 1978, Stocking 1983). De- colonizing and post-modern pedagogies also blurred the notions “home” and “abroad,”
“inside” and “outside.” They asserted that field sites must be negotiated, and research and writing given reflection (Clifford 1997). In these frameworks, the fieldworker herself may be the anthropological subject (Behar and Gordon 1995).
As more anthropologists conduct research “at home,” rather than in a more traditional foreign field setting, additional issues will surface and should be discussed.
The close proximity of the research community to my home produced new responsibilities. In conjunction with my research role, and because I believe deeply in social justice and health care as a right, I volunteered to assist patients when I was not actively collecting data when my research participants asked for my help. Not showing up for a research day meant more than data lost; it sometimes meant that a patient did not get assistance in enrolling in a free prescription plan or did not get help in finding a free program for diagnostic mammography. The clinic volunteers and medical staff were not negligent, but rather there were too few clinic staff, too many problems. I was
65 additionally called upon to present preliminary findings to the clinical volunteers throughout my research, provide training to nursing students on how to use interpreters, and asked to present a paper at a national YMCA conference in place of the clinic’s medical director.8
Research in our own backyard may challenge anthropologists to extend our involvement beyond the interview in new situations. Instead of this being a burden, my experience taught me that anthropologists can creatively find ways to be both researcher and advocate. Any additional responsibilities I carried while at the clinic fed directly into my data and analysis and shaped my experience with the community.
II. The People’s Clinic
The People’s Clinic was founded in1981 in a low income area of a major city in
Texas. The idea for a formal clinic began with a nursing professor from a nearby School of Nursing and students from his “community clinical” rotation.9 At this time, the neighborhood experienced a rise in the number of refugees from Cambodia and Mr.
Kendall, the professor, wanted to help. Mr. Kendall explained these humble beginnings during an interview with me. He said, “There were a lot of people with a lot of needs.
We knocked on doors with students…we would find problems and wanted to fix the problems right there. We began to hold onto some data and made a community assessment tool.” They took the assessment tool to various community agencies and
8 I happily made these presentations and training sessions once the data collection period was over in order not to unduly influence the very behaviors I was examining. 9A clinical class is one in which students practice medicine under supervision of a preceptor in real world settings, such as nursing homes, schools, clinics, and hospitals.
66 used that data to get grants and additional health care volunteers. They started the first community health care center in Texas, housed in the local police station; the clinic was later taken over by the large county hospital.
Mr. Kendall further explained that the philosophy of the clinic came originally from the nursing model of district health, “We wanted to take responsibility for this area. We knew what to do, we didn’t need anyone’s permission.” They operated a mobile clinic for the next few years and finally, in 2000, rented the basement of a local church. In the initial months they only saw patients on Saturday but gradually, with more volunteers and funding, they slowly added clinic days, until in 2006 they were open Wednesday through Saturday.
The People’s Clinic is a not-for-profit agency with 501(c)(3) status. Federal law allows religious, educational, charitable, scientific, or literary organizations to be exempt from paying some federal taxes under this status. During 2006-2008 the clinic had approximately 5,500-6,000 patient visits a year. One quarterly report stated that because of clinical volunteers and a large pool of donated prescription medicine (mostly pharmaceutical samples), they treated each patient for less than $25, including all necessary medicines. The 2006 annual report provided the following information on how many patients were seen in 2006, how many patients received medication, other services the clinic provided, and their estimated monetary value.
67 Figure 2.1 Clinic 2006 Annual Report Data
Clinic Organizational Structure
Since the clinic medical director was a professor of nursing, the majority of clinicians were family nurse practitioners10 (FNP), pediatric nurse practitioners, and
bachelor’s level nursing students. On an average day, three FNP’s were present: a
pediatric nurse practitioner and one or two family nurse practitioners. Additionally, the
clinic was able to offer some specialty services on a consistent basis: every third Friday a
psychiatrist volunteered her morning, and every other Saturday, a dermatology clinic
was held comprised of a dermatology professor and a few residents from a nearby
teaching hospital. During the academic school year a nurse-midwife performed
women’s health exams one afternoon a week. All of the nurse practitioners and
physicians, except the dermatology professor, were Anglo-American. Most clinicians
were affiliated with the Methodist or Presbyterian Church with the exception of two
who self-identified as agnostic.
All clinicians were unpaid volunteers. Those with whom I spoke vocalized a
strong sense of social justice and held the belief that health care was a right to all
10A nurse practitioner is someone with a master’s degree in nursing and is able to prescribe medicine.
68 people living in the community. During my interview with Mr. Mills, one of the core family nurse practitioner volunteers, he commented on his motivation to return to the clinic every week; he said, “The clinic helps me to live my values in a meaningful way, that’s what motivates me.” Another female nurse practitioner stated that her reason for volunteering was that the People’s Clinic was not a bureaucracy like the county hospital for indigent patients, with “intentions and entanglements and limited access to care.”
She strongly aligned herself with the People’s Clinic’s philosophy of “not turning anyone away…so if [the patient] can give [a cash donation], you give. If you can’t give you don’t have to worry about giving.” These beliefs inspired volunteers and played an extremely important role in the sustained success of the clinic.
A social worker, Ms. Kendall, was the nonprofit clinic’s Executive Director. She was also the wife of the clinic’s medical director, Mr. Kendall. Ms. Kendall worked two days a week and was in charge of the “front of the house” things, such as the intake process and administrative duties. In her role as Director of the clinic, she acted both as gate keeper and advocate. She met with every patient before they saw a clinician to determine if they were eligible to be seen at the clinic (i.e., no insurance or access to the county hospital). She additionally helped patients who needed to seek treatment elsewhere, usually because the clinic did not have the resources to treat more complicated diseases that required x-rays or specialized tests, insulin, minor surgery, etc.
Three to five promotoras, or female lay community health care workers, also worked at the clinic part-time as interpreters and cultural liaisons. Promotoras were the
69 only people employed (paid) by the clinic besides the social worker/clinic director. The
promotoras were from the local neighborhood, all but one was a first generation
Mexican immigrant, and most of them were patients of the clinic prior to becoming
employees.
Figure 2.2 Clinic Organizational Structure
The Patient Population
Individuals who were eligible to utilize the clinic could not have access to the county hospital, to private health insurance, or to governmental assistance such as
Medicaid, Medicare, or the State Children’s Health Insurance Program (S-CHIP). The
large county hospital in the area did not provide health care other than emergency
treatment to people who were not residents of the county and people who were
offered insurance at their place of employment. This meant if a person worked for a
company that offered insurance, even if the cost per month was too high for them to
afford, they could not see a doctor at the county hospital, other than at the ER. Unlike
other clinics and hospitals in the area, the People’s Clinic did not ask for an identification
card, proof of residency, or proof of legal immigration status. The clinic asked for a
70 donation in an amount that the patient could afford that would cover the visit and any medication. Most patients gave $5-$20, but patients were not turned away if they could not make a contribution. Clinic volunteers strongly preferred to keep the clinic open to anyone who needed health care and had no other place to go.
The constraints at the People’s Clinic were similar to a managed care clinic.
While there was not a policy about the length of patient visits and clinicians knew they could spend as much time with a patient as needed, they were also aware that most days, some people were turned away unseen. Other practice constraints included a lack of sophisticated equipment or lab technology; a lack of continuity of care for patients due to the voluntary nature of the clinician; and an inconsistent availability of promotoras.
Over time, the population in the community surrounding the clinic changed from
Cambodian refugees to Mexican and Central American immigrants. Because the
People’s Clinic was the only health care facility in the area that treated people regardless of where they lived, their citizenship status, and whether they could donate, patients came from all over, some up to three hours away. The majority of patients at the clinic were first generation Mexican immigrants (50%). These were followed by
Mexican-Americans (20%), Central American immigrants (10%), refugees from Burma,
Cambodia, Sudan (10%), African-Americans (5%), and Anglo-Americans (5%). Most patients had chronic illnesses such as diabetes, high blood pressure, depression, and asthma, but the clinic also treated acute conditions such as colds and the flu.
71 Census data from America Community Survey 2005-2007 further tells us that
39.4% of the population in this county, or 837,852 people, spoke a language other than
English at home. Thirty-seven percent, or approximately 866,887 county residents, described themselves as Latino/a. The county ranked 34th in the nation for the percentage of people living below the poverty line (17%).
III. Participant Observation
This project utilized a mixed method approach to research including participant
observation of the clinic setting, medical encounters, and outreach activities;
unstructured and semi-structured interviews with patients, clinicians, and promotoras;
and patient surveys. All research protocol were reviewed and approved by the
Institutional Review Board of the Case Western Reserve University.
Figure 2.3 Methods Used Summer Fall/Winter Summer Fall/Winter Summer
2006 2006 2007 2007 2008 Participant X X X X X observation Observation of 90 X X encounters Observation of X X nursing clinical Observation of 30 encounters with X X patient interviews/survey Clinician X X interviews
Participant observation and unstructured interviews with clinicians, promotoras,
clinic volunteers, and patients formed a contextual knowledge base from which to
72 understand subsequent data. For linguistic anthropologists, ethnographic analysis and participant observation is critical for an in-depth understanding of the role of language in social situations (Hymes 1964). “Language and other social practices are interdependent. Knowing…the ethnographic setting, the perception of and characteristics attributed to others, and broader and local social organizational conditions becomes imperative for an understanding of linguistic and nonlinguistic aspects of communicative events” (Cicourel 1987: 218, see also Lazarus 1988).
Understanding the cultural fabric and broader environment of the clinic helped me to understand the situations in which good communication practices and therapeutic relationships were formed.
Byron Good (1994) suggested that medicine can be examined as a “symbolic form through which reality is formulated and organized in a distinctive manner” (68).
Foucault (1972) additionally theorized that medical discourse consists of “practices which systematically form the objects of which they speak” (49). Thus, my participant observation was informed by an interest to understand this process by which clinicians
“see” and inhabit a culturally-informed medical paradigm. This research was interested
in questions such as, with such a supreme focus on the biological basis of health and
disease in biomedicine, how might clinicians engage with culture in a medical way, both
inside and outside the medical encounter? How does the belief of culture, cultural
differences, and a culturally informed model of health care become created as a distinct
form of reality?
73 Participant observation also allowed me to triangulate with other methods to determine differences between what people said to me and what was actually done.
Field notes and notes on methodology benefited the internal and external validity of my study, facilitated and enhanced the quality of my interpretations, and helped me formulate clinician and patient interview questions (Bernard 2002; DeWalt and DeWalt
2002).
Throughout the duration of the study (July 2006-July 2008) my observations included:
1. The general day-to-day routine of the clinic, for example:
o The “front of the house” including the waiting room and triage area – Sitting at the front desk with the lead promotora and social worker, I observed the
different types of patient problems, heard stories about other clinics in the
neighborhood, observed the social worker refer more complicated patients to
another clinic or hospital with better resources (x-rays, labs, or cultural
resources), observed the social worker help patients with applications or
problems with Medicaid, food stamps, insurance, etc. From the front desk area
I could also observe interactions between the promotoras themselves, the
social worker and the promotoras, and the patients in the waiting room.
o The “back of the house” including pharmacy and exam rooms – Clinicians and other volunteers (such as students) gathered in the pharmacy. The pharmacy
also represented a division of social status among volunteers because it is not a
place where the promotoras or social worker gathered. In the pharmacy, I
74 heard clinicians’ reactions to patients they had just seen, general talk about
diseases, general talk about patients, and general talk about nursing.
2. More than 120 family nurse practitioner (FNP) and patient medical encounters; 30 of
these were audio recorded and I administered either a post-visit interview (21) or
survey (9) to these patients.
3. The nursing student community health clinical program – During the study, there
were two clinical rotations per semester of eight nursing students. I collected data
from three groups of students, including their weekly journals.
o I observed three clinic orientations, held on the student’s first day. These orientations were meant to show students the proper clinic procedures and
how to care for this patient population.
o I observed how students behaved in a medical encounter, how this was different (or not so different) than seasoned clinicians, and how students
learned to take care of indigent patients.
o I observed how students were sensitized to the clinic philosophy of cultural competence and holistic care, namely the transfer of cultural knowledge and
information from the nurse practitioners and promotoras to the nursing
students about immigrant health and culture. This unique opportunity allowed
me to explore how such issues as culture, ethnic identity, cultural differences,
education, and socio-economic status were rendered as objects of medical
attention in education and in clinical interaction (Santiago-Irizarry 2001).
75 Analysis of this process can serve as an entree to an analysis of the way in which
a culturally competent medicine is constructed and taught.
4. I accompanied FNP’s and nursing students on “outreach” activities including visiting
immigrants and refugees who could not make it to the clinic. Outreach remains an
important function of the clinic since the People’s Clinic was started from outreach
efforts to Cambodian refugees.
In short, the hours I spent as an observer helped me become familiar with the day-to-day routine of the clinic, establish trust and rapport with clinic staff, and generally observe the rewards and challenges the clinic faced in caring for immigrant and non-English speaking patients. I also saw how the clinic operated on a daily basis, including how the clinic was organized, clinic philosophy, and patterns of interactions and relationships among clinicians, nursing students, staff, and patients.
Ethics and My Role as Participant Observer
Participant observation is a basic tool of ethnographic research. I saw patient education programs begin and fail; I overheard numerous conversations about diseases and immigrant patients in the pharmacy; I observed the primary nurse practitioner, Mr.
Kendall, in his training of nursing students – he discussed diseases but also how one should treat patients, especially poor patients; I saw disenfranchised patients in their home environment receive medical care they would not otherwise receive. These observations are priceless.
Participant observation has as its core a tension between participation and observation. During data collection, I spent the majority of time as a participant-
76 observer versus a more detached observer-researcher. For example, as a participant- observer I helped with filing patient charts during clinic down time; I greeted patients and eventually helped with the checking in process when no one was available; I sometimes acted as a medical interpreter when a promotora wasn’t available; I volunteered in the pharmacy (under supervision) while “hanging out,” as I helped stock and organize medicines; I helped patients enroll with various pharmaceutical programs and helped them with paperwork when they were referred elsewhere for treatment (for example, getting a diagnostic mammogram). I also participated in outreach activities such as going door to door in refugee communities to administer flu shots with another medical anthropologist and nurses from the health department; I made home visits with nursing students to Mexican immigrant patients who had trouble getting to the clinic; I participated in and eventually took over refugee outreach (after data collection was over in July 2008) to refugees from Bhutan, Burundi, and Karen refugees from Burma.
During my fieldwork, I struggled with the ethics of being a participant-observer, namely conflicts around my role as a researcher and the situations that arise when conducting research with poor and powerless people. Rather than an objective execution of the method, which is simply unrealistic, I grappled with my roles as researcher, volunteer, and at times, paid clinic staff worker. My pendulum of participant observation was not always balanced over the 2 years of fieldwork. During the exact mid-point of the research (summer 2007), I became overly involved with participating when the executive director and medical director (wife and husband team) left the country for three months and asked me to be one of the people in charge of the
77 day-to-day operations of the clinic. I was also briefly (two months) the volunteer
coordinator, a paid position that created stress while staff tried to understand my
multiple roles of researcher, volunteer, and paid staff. The situation was luckily resolved
when another volunteer offered to take over this job for free. These experiences taught me the importance of “critical distance” and the ability to question categories and findings from an outsider or detached perspective (Sobo 2009: 72).
I also found it difficult to obtain informed consent during outreach efforts.
When visiting people in the community with clinic representatives (like a promotora, family nurse practitioner, or nursing student) I found it awkward to bring out a consent form, explain anthropology and my project, and continue to observe. Likewise, refugees simply had a difficult time understanding my project and anthropology itself. While they gave verbal consent for me to observe their medical visits or home visits I wasn’t sure they totally understood. Situations in which there was a problem with the consent process are not included in this dissertation.
Most of all, I found it difficult to face the extreme situations in which my participants lived. I was not prepared for what was expected of me in the field. While helping people in their homes, I listened to situations and memories of trauma that left me with many sleepless nights. I learned that a researcher must draw a line for him or herself about which ethical actions to take. The anthropologist who believes she should give back to the community she is studying carries with her an additional burden of responsibility, especially when the “field” is a car-ride away.
78 For example, when a research participant tells the anthropologist immediately
after she has observed his medical visit that he needs help applying for food stamps because he has no food at home, there is no question about the right course of action.
Many times, the patient I had just observed needed additional medical care, such as a referral for further testing. Other times, while making home visits to immigrants and refugees, I found additional need for basic living items, such as food. I always tried to help because I knew I had the skills and resources, whether the assistance was a phone
call to inquire about a hospital bill or whether I needed to help a refugee, who had been
in the U.S. only one month, make arrangements for her husband who had just committed suicide. To me these are some of the ways I could give back to the specific participants and communities who so graciously let me observe and ask details about their health and their private lives.
My roles shifted throughout the research process, from researcher to advocate
to clinic volunteer; these roles allowed me to better understand all sides of the
observed situation. Throughout this dissertation, my goal was to understand why the
research participants acted in the manner they did, to see the medical encounter from
the patient and clinician perspectives. My desire to provide the People’s Clinic with
honest feedback and clear recommendations on patient care ensured an objective
analysis of the data and reporting process.
79 IV. Clinician-Patient Observations & Interviews
A key feature of this project is the observation of patient-clinician-interpreter interactions in the medical setting in order to identify communication strategies that patients, clinicians, and interpreters use when they have dissimilar language and cultural backgrounds. I observed a total of 120 medical encounters; 30 of these were recorded for more specific analysis. Data collected from each encounter allowed me to examine:
• General communication styles including the ways clinicians elicited patient
symptoms, illness history, and negotiated a treatment plan and follow-up visits,
as well as how patients shaped the encounter to accomplish their goals and
expectations for the visit
• How participants shared their health beliefs and other information including the
manner in which these beliefs were shared
• How clinicians delivered patient education
• How participants used interpreters and the role of interpreters themselves
• How communication styles may have affected patient outcomes such as
satisfaction and understanding
Some medical encounters included student nurses. These encounters consisted of student nurses collecting the disease history and chief complaint and conducting a physical exam. Then a family nurse practitioner (FNP) would enter the room, review the student’s work, and finish the medical encounter. Fifty-four observed (but not recorded) medical visits and eleven observed and recorded medical visits included a student nurse.
80 Sampling and Patient Selection
After patients were signed in by the social worker, they sat in the waiting room
until called by a promotora or student nurse to get their vital signs taken. After this process, they returned to their seats in the waiting room until they were called to an exam room. I approached patients at random in the waiting room after their vital signs were taken. I tried to observe a mix of new and returning patients and I oversampled male patients when they came into the clinic because women and children made up the predominant patient population.
My selection process involved the following: I looked at the charts of patients waiting to be called to an exam room. I randomly picked a patient’s name from his or her chart and approached the person in the waiting room. I explained the study in
Spanish or English,11 reviewed the consent form, and got his or her permission to
observe the medical visit and conduct a post-encounter interview. At the end of our
conversation, I reiterated I would observe their medical visit, including everything they
discussed with the doctor, and would be in the exam room. The refusal rate was less
than 2% for new patients, and no returning patients refused to participate.12
Once the patient was placed in an exam room, I watched from the back of the
clinic to observe which clinician would see the patient. With no policy in place regarding
continuity of care, clinicians saw patients based on which patient was next in line. All
11In the beginning of the study, I used an interpreter for the consent process and for patient interviews. As the study progressed, my Spanish skills, and particularly my medical Spanish knowledge, greatly improved. If I used an interpreter during the patient interview, I used an interpreter different than the one used in the medical encounter. 12 I observed but never recorded three medical encounters with the volunteer psychiatrist. Due to the sensitive nature of the encounter, the psychiatrist believed it would hinder her rapport with the patient to audio record the encounter.
81 clinicians signed general consent forms for me to observe them with patients. After determining which clinician was going to see which patient, I asked the clinician if I could observe the specific interaction, noting that the patient had already consented.
The clinician and I usually entered the exam room together.
When possible, I chose to follow the same few clinicians. Multiple observations and unstructured conversations after the encounter with the same clinicians enhanced the reliability of my analysis and allowed me to distinguish between behaviors that were routine, accidental, and exceptional for each clinician-patient encounter. For instance, after hearing clinician A talk with someone who had high blood pressure several times, it became apparent that this style was different than clinician B’s style.
Unrecorded Medical Encounters
The first 90 medical encounters I observed were not recorded and no patient interviews occurred. I observed and took notes during these encounters in order to better understand the normal routine of a medical visit: what happens when, what sort of questions are asked during the history taking, when the physical exam happens, how patient’s ask questions, how things are explained, and so forth.
Observing 90 visits provided a foundation for the actions during the next phase, a detailed linguistic examination of 30 recorded patient encounters. For example, if a patient had diabetes, I knew what questions would be asked by the clinician, what should be examined, the type of education the patient would receive. I became familiar with how some clinicians explained the disease, treatment, and follow up, and noticed when other clinicians did not; I came to know when promotoras were used and when
82 they were not. In short, the initial 90 observations provided a roughly standard template of the typical medical encounter.
The following graphs show demographic information of the 90 patients and clinicians I observed. Figure 2.4 shows the breakdown of patient age. Most patients fell in the 25-34 and 35-44 age ranges. The mean patient age was 40.6 years, with the range of 2 to 66 years.
Figure 2.4 Patient Age Patient Age (n=90)
65+ 5 55-64 16 45-54 12 35-44 25 n=90 25-34 21 18-24 9 1-17 2
0 5 10 15 20 25
Figure 2.5 shows patient sex. The majority of patients at the People’s Clinic were female (71%).
Figure 2.5 Patient Sex Patient Sex (n=90)
male (26) female (64)
83 Figure 2.6 shows patient country of origin. Forty-five percent of patients were born in Mexico. The next category, “unknown Latino/a” (37%) represents patients who were not born in the United States but did not discuss their country of origin.
Figure 2.6 Patient Country of Origin
Patient Country of Origin (n=90)
Mexico 41 Unknown Latino/a 34 Other 6 El Salvador 3 Honduras 2 Guatemala 2 US, non-Hispanic 2
0 10 20 30 40 50
Figure 2.7 shows that 88% of patients spoke Spanish as their primary language.
Figure 2.7 Patient Primary Language
Patient Primary Language (n=90)
Spanish (80) English (10)
84 And lastly, figure 2.8 shows that over half of patients, 55%, were treated for type
II diabetes, hypertension, depression, or another chronic illness; 45% of patients were treated for an acute problem, such as cold, infection, or some form of body pain.
Figure 2.8 Patient Biomedical Diagnosis
Patient Biomedical Diagnosis (n=90)
Type II Diabetes 9 Hypertension 14 Cholesterol and DM 2 DM and HTN 3 Depression + DM or HTN 10 Depression 1 Other MH 5 Infection (cold, flu, sinus, tooth) 14 Body Pain 8 n=90 Asthma 3 Thyroid 2 Allergies 2 Stomach Pain 2 Headache 2 UTI 2 STD 3 Other 8
0 2 4 6 8 10 12 14
DM=type II diabetes, HTN=hypertension, MH=mental health, UTI=urinary tract infection
Figure 2.9 shows the clinician demographics for the 90 observed encounters.
Over the 90 patient encounters, I observed 12 clinicians. Most of the clinicians I observed were family nurse practitioners or nurse practitioner students. The majority of clinicians were female. Four medical doctors volunteered once a month and saw eight patients in my sample.
85 Figure 2.9 Clinician Sample (n=90)
Volunteer Clinician Times Sex Age Ethnicity Training observed Frequency
Mr. Kendall 33 male 65 Anglo-American FNP/professor weekly Ms. Engle 13 female 36 Anglo-American FNP weekly Mr. Mills 6 male 33 Anglo-American FNP/professor weekly Ms. Smith 3 female 30 Anglo-American FNP/professor monthly Ms. Peterson 1 female 49 Anglo-American Pediatric NP weekly Mr. Jim 12 male 24 Anglo-American FNP student weekly Ms. African- 3 female 30 FNP student weekly Davenport American Ms. Kross 2 female 23 Anglo-American FNP student weekly Unknown 9 FNP Student Dr. K 4 female 41 Anglo-American MD/psychiatrist monthly Dr. Kay 2 female 39 Anglo-American MD monthly Dr. B 1 female 52 Anglo-American MD/immunology monthly Dr. McG 1 female 46 Anglo-American MD/internist monthly
Recorded Medical Encounters& Patient Interviews/Surveys
Thirty of the 120 medical encounters were audio recorded and I conducted semi- structured interviews with patients or administered a survey after the visit. I personally conducted some of the interviews in Spanish, especially if the patient knew some
English. Some patients spoke no English and an interpreter was needed. I used an interpreter different than the one present for the medical visit so as not to influence the patient’s answers about communication. All encounters and interviews were recorded for later transcription and analysis.
The initial interview and survey questions were designed to collect data on patient satisfaction and expectations of this particular medical encounter as well as demographic information. After the first four interviews, I added specific questions
86 about patient illnesses and treatments to get at their explanatory models. I also added
questions to the interview to elicit the patient’s belief about the illness, etiology, course
and outcome, as well as their thoughts about the treatments they were currently
undergoing.
While less than 2% of the people I approached in the waiting room declined to
participate, I noted that some interviews were shortened because of time. Thus, I
created a survey for the patients who had already waited two to five hours at the clinic
and did not have the time necessary for an interview. I designed this survey directly
based on the interview, which was then translated into Spanish by a native Spanish
speaker from Mexico. A total of nine patients indicated they did not have time for an
interview and instead filled out a survey. Patients could choose between an English or
Spanish version of the survey. Both the survey and interview can be found in Appendix
I.
Recorded medical encounters (n=30) lasted on average 26 minutes with the range being 5 minutes 30 seconds to 71 minutes. The following graphs provide demographic information for these 30 patients.. A comparison of the 90 observed visits with the 30 observed and recorded visits indicate that the 30 recorded patient encounters are similar to the regular clinic patient population and thus could be generalized to the entire clinic population.
Figure 2.10 shows the breakdown of patient age (n=30). Most patients fell in the
35-44 and 55-64 age ranges. The mean patient age was 43.3 years, with the range of 17 to 63 years.
87 Figure 2.10 Patient Age
Patient Age
65+ 0 55-64 8 45-54 6 35-44 9 n=30 25-34 3 18-24 3 1-17 1
0 2 4 6 8 10
Figure 2.11 shows patient sex. The majority of patients I observed and interviewed at
the People’s Clinic were female (76%).
Figure 2.11 Patient Sex Patient Sex (n=30)
male (7) female (23)
Figure 2.12 shows patient country of origin. Seventy percent of patients were born in Mexico. Thirteen percent of patients were U.S. born Latino/a.
88 Figure 2.12 Patient Country of Origin
Patient Country of Origin (n=30)
Mexico 21 US born Latino/a 4 El Salvador 2 Unknown Latino 2 Columbia 1
0 5 10 15 20 25
Figure 2.13 shows that 76% of patients spoke Spanish as their primary language.
Figure 2.13 Patient Primary Language
Patient Primary Language (n=30)
English Spanish
And lastly, figure 2.14 shows that over half of patients, 63% were treated for type II diabetes, hypertension, depression, or another chronic illness; 37% of patients had an acute problem, such as cold, infection, body pain.
89 Figure 2.14 Patient Biomedical Diagnosis
DM=type II diabetes, HTN=hypertension, MH=mental health, UTI=urinary tract infection
Figure 2.15 shows the clinician demographics for the 30 observed encounters.
Over the 30 patient encounters, I observed 10 clinicians. Most of the clinicians I observed were family nurse practitioners or nurse practitioner students. The majority of clinicians were female, although the majority of the 30 patients saw a male family nurse practitioner (73%). Three medical doctors volunteered once a month and saw three patients in my sample.
90 Figure 2.15 Clinician Sample (n=30)
Volunteer Clinician Times Sex Age Ethnicity Training observed Frequency
Mr. Mills 13 male 33 Anglo-American FNP/professor weekly Mr. Kendall 9 male 65 Anglo-American FNP/professor weekly Ms. Childs 1 Female 37 Anglo-American Pediatric NP monthly Ms. Engle 1 female 36 Anglo-American FNP weekly Unknown 3 FNP Student Dr. Kay 1 female 41 Anglo -American MD/psychiatrist monthly Dr. Henry 1 female 39 Anglo-American MD monthly Dr. McG 1 female 46 Anglo-American MD/internist monthly
Clinician Interviews
Four clinicians participated in a semi-structured interview. Questions covered
the following topics: feelings about this patient population (Mexican, Central, and South
American immigrants), stories of successful and unsuccessful patient encounters,
cultural barriers, their experiences using interpreters, communication strategies, and
their explanatory models about the top five diseases seen at the clinic. The interviews
ranged from to one hour and 24 minutes to two hours and 15 minutes. The clinician
interview can be found in Appendix I.
V. Data Analysis
Participant Observation and Interviews
Both observational field notes and patient and clinician interview transcripts
were imported into QSR NVIVO text management software. I used grounded theory to identify themes and concepts across notes and interviews; this method provides a
91 rigorous procedure for developing theoretical models from the relationships among
themes (Bernard 2002).
Lyn Richards(2005)explained a step by step progression of looking past
descriptive codes in order to formulate analytical themes. Through an iterative process
I continually reviewed field notes and transcripts in order to pose new questions and reformulate old ones. At the end of each passage I asked myself, “Why is this
interesting? What is the significance of this?” This process generated the first wave of
open codes, the descriptive codes. I saved these “first-hunch” notes in the software
itself as memos so that I could keep a log of early reflections.
Once the descriptive codes were created, I needed to bring passages together to
look for higher level codes. Richards (2005: 88) described this as analytical coding which
leads to “theory ‘emergence’ and theory affirmation.” Once observations and interview
text were coded by theme I began to consider the meaning of these themes in context
(Strauss and Corbin 1990; Bernard 2002). Through developing and applying categories
and codes, I built and generated theories about the ways in which culturally- and
linguistically-different clinicians and patients interact and relate with one another.
Transcribing and Coding the Medical Encounter
Transcription of the medical visit was a detailed and involved process of
listening, playing back, and listening again and again to make certain of the pauses,
overlaps, and intonations of speech. I initially transcribed the medical visits. For each
recording I first completed a rough transcription to outline the initial shell of the interactions. I then returned to the raw data for a more detailed transcription. All
92 medical encounters in which the patient spoke Spanish were then sent to a bilingual
research assistant who completed a detailed transcription, and then translated the transcription from Spanish to English. In the final step of the transcribing process I listened again to the recording to finalize the text and add transcription notations for discourse analysis (such as pauses, overlaps, interruptions, etc). A full description of linguistic transcription notations can be found in Appendix II. Below is a sample of a final transcript:
FNP = family nurse practitioner P/I = promotora/interpreter P = patient FNP: No mucho ingles, ah español. Not very much English, ah Spanish. [door opens and closes and interpreter comes in] Um, so how have you been? P/I: Como se ha siento. How have you felt? P: Oh, bien. Oh, good. FNP: No problems or concerns? P/I: No problemas? Any problems? P: No, todo esta bien. No everything is good. P/I: No, everything is fine.
Two separate analytical phases occurred for each medical visit, discourse analysis and qualitative analysis. Discourse analysis allowed me to demonstrate how information is passed back and forth between the two subjects, how the patient and doctor fulfill their sociolinguistic roles, and the methods used to exercise power and control.
For example, each transcript of the medical visit was coded by hand for clinician and patient questions, interruptions, overlaps, misunderstandings, and education
93 strategies. The importance of each of these areas is well documented in linguistic
anthropology and was reviewed in Chapter 1. Because the transcript depicts oral
language, analysis consisted of not only reading the transcript, but also listening
simultaneously to the audiotape to capture the full meaning of what was said.
The medical visit transcript was also imported into QSR NVIVO 2.0 text
management software for qualitative analysis of explanatory models (EM) and illness
narratives, such as:
• What kind of information do patients share with their clinicians?
• Is the sharing of EMs encouraged?
• How do patients share their EM?
• How to clinicians share their EM?
• What is the role, if any, of “cultural” information in the encounter?
• How do participants react to cultural or lifeworld information?
Finally, as a tool for coding passages about the role of the promotora/interpreter, I used NVIVO 2.0, which also allowed me to code how promotoras and clinicians worked together.
To summarize, this research utilized a multi-method ethnographic research approach at a free clinic that treated primarily Mexican immigrants. Central to my research aims was an awareness to document how clinicians and clinic staff were
“culturally competent” both at a micro-encounter level and macro-organizational level.
The next chapter reviews current definitions and theoretical models of cultural
94 competence in medicine and how clinicians understood and made use of notions of culture, cultural difference, and structural barriers such as poverty and hazardous working conditions.
95 Chapter Three: Do Cultural Competence Communication Strategies Alleviate Cultural “Barriers?”
Cultural competence theories assert that cultural differences between patients and clinicians create barriers to treatment in health care settings. This chapter explores current guidelines for culturally competent communication strategies and shows how clinicians at the People’s Clinic applied such strategies. Because the clinic was the site of a community clinical for nursing students from a local research university,13 data were also collected about how nursing students learned the socio-cultural milieu and cultural characteristics of this patient population during their clinical rotation. That is, how they were taught to be “culturally competent nurses.” Additionally, this chapter focuses on how clinicians at the People’s Clinic widened their gaze regarding patients’ cultural health beliefs and incorporated macro-structural barriers and the health of the larger community.
I. Cultural Competence
A review of the recent literature shows that the concern with social service delivery and accessibility of treatment to immigrant and minority patients in medicine is largely limited to a concern for providing what is termed “culturally sensitive” services.
The notion that medical institutions and its practitioners should be culturally competent emerged in the late-1980s and accompanied a shift away from the analysis of poverty and adverse living and working conditions to the analysis of cultural and linguistic
13 A “clinical” is a set of classes in which students practice clinical nursing under supervision of a preceptor in real world settings, such as nursing homes, schools, and hospitals.
96 difference as an answer to poor health care outcomes among immigrants and minorities
(Shaw, 2005). Advocates for cultural competence believe that introducing culturally
sensitive practices decreases cultural and linguistic barriers and increases certain patient
outcomes, such as patient understanding, satisfaction, follow-up, and treatment
compliance (Brach and Fraserirector 2000; OMH 2001).
Over the past 15 years, many health care institutions, and almost every health
profession, have made cultural competency a priority (Hunt and de Voogd 2005). In
2002, the Liaison Committee on Medical Education required that all medical schools
integrate cultural competence into their curricula (Benacourt, et al. 2005). The
American Medical Association also endorses cultural competence and has developed
several curricula for medical students as well as continuing medical education (CME)
programs.14 Currently there are two states, California and New Jersey, which require physicians to take cultural competence training as part of their annual CME hours
(Landers 2009). The wide spread impetus for the adoption of culturally sensitive
practices has primarily come from health disparity research finding health inequalities
among minority groups and from governmental agencies such as the U.S. Office of
Minority Health, a division of the Department of Health and Human Services (Chavez, et
al. 1992; Brach and Fraserirector 2000; Carrillo, et al. 2001; OMH 2001; Vega and Alegría
2001; Vega, et al. 2001; Putsch 2002; Hirsch 2003).
14http://www.ama-assn.org/ama/pub/physician-resources/public-health/general-resources-health-care- professionals/educating-physicians-controversies-challenges-health/vulnerable-populations.shtml, accessed 3/10
97 Most cultural competence models build upon medical and linguistic anthropological research that highlights differing explanatory models (EM) of illness among cultural groups. Explanatory models are simply concepts about a specific illness or disease that the sufferer holds and includes ideas about the diagnosis, etiology, and
treatment preferences. EMs are fluid and culturally-constructed, rooted in culturally
symbolic and tacit health belief systems about a particular illness episode (Kleinman
1980; Gaines 1992a). Despite the fact that current research and education on cultural
competence is increasing, anthropologists have not thoroughly engaged the recent
institutional applications promoted by cultural competence models (Shaw 2005). 15
Based on my analysis, I contend that the current debates surrounding cultural
competence provide several areas ripe for anthropological study. Not only are
anthropologists interested in the myriad of ways “culture” is used in our society, but
medical anthropologists have a historical legacy of studying the construction of medical knowledge(for example, Kleinman 1978; Mishler 1981; Gaines 1982a, 1992; Engel 1984;
Good and Good 1993; Good 1994). Qualitative and ethnographic methods are vital in highlighting the articulation between the patient and the clinical explanatory model; the latter model is often treated as uncontroversial and legitimate in cultural competence research. Anthropologists, whose focus is holistic, can also incorporate political and economic determinants of society into studies of health and medicine (Lazarus 1988;
Santiago-Irizzary 1996;Hirsch 2003; Hunt 2005; Shaw 2005). Perhaps the most
15 There has been some scholarship in the areas of psychiatric anthropology and international health. However, with such a central focus on the role of culture and language in cultural competence theories, anthropologists have been surprisingly silent on this specific framework. Some exceptions include Fortin 2008, Kleinman and Benson 2006, Shaw 2005, Hirsch 2003, Taylor 2003, Santiago-Irizarry 1996, 2001, and Lazarus 1988.
98 important reason to probe this topic further is the potential for designing interventions
that would improve health care services, making them more accessible to a diverse
range of people.
What is Cultural Competence?
All cultural competence models incorporate actions to manage both linguistic
and cultural differences at the health care organization as well as in the medical
encounter (OMH 2001). Based on a literature review of 40 research articles on cultural
competence from various disciplines (medical anthropology, medicine, nursing,
psychology, and social work), a number of definitions and theoretical models emerged.
The following overview includes an exploration of the main cultural competence models. They are arranged from general definitions of cultural competence to more comprehensive theoretical models. My goal in reviewing models is not to enter into a debate over which theoretical model is more correct, but rather to constructively challenge the assumption that including “culture” as a “barrier” to health is a worthwhile endeavor (Sobo 2009).
Definitions
Most authors define cultural competence using a variation of a definition developed by mental health researchers two decades ago. Cross and colleagues (1989) defined cultural competence as “a set of congruent behaviors, attitudes, and policies that come together in a system, agency or amongst professionals and enables that system, agency or those professionals to work effectively in cross-cultural situations”
(2). The U.S. Office of Minority Health also adapted their definition from Cross and
99 colleagues. Several research articles used this broad definition as the basis for their research of clinician behaviors, patient attitudes, and evaluation of cultural competence training programs (Dolhun, et al. 2003; Johnson, et al. 2004; Beach, et al. 2005;
Betancourt 2005; Park, et al. 2005; Price, et al. 2005). These articles simply defined cultural competence without elaborating on a theoretical model or framework.
The National Center for Cultural Competence at George Washington University also defines cultural competence very broadly at both a macro-organizational level and micro-encounter level and requires organizations to:16
• Have a defined set of values and principles, and demonstrate behaviors, attitudes, policies and structures that enable the organization and those who are employed there to work effectively cross-culturally. • Have the capacity to (1) value diversity, (2) conduct self-assessment, (3) manage the dynamics of difference, (4) acquire and institutionalize cultural knowledge, and (5) adapt to diversity and the cultural contexts of the communities they serve. • Incorporate the above in all aspects of policy making, administration, practice, service delivery and involve systematically consumers, key stakeholders and communities.
Theoretical Models
Theoretical models move from a definition of cultural competence to hypotheses about specific actions clinicians and organizations should utilize in their efforts to become culturally competent. Some models incorporate meaning-centered methods to illuminate the role of culture and others are more comprehensive in scope to include factors other than culture and culture difference.
16http://nccc.georgetown.edu/foundations/frameworks.html, accessed 3/2010
100 Meaning-centered and cognitive theoretical models utilize explanatory models or patient-centered models of care. These models believe that focusing on 1) the
patient’s experience, meaning, and understanding of the illness, and 2) the way of
communicating the illness and treatment are instrumental to achieving cultural
competence. Researchers advocate using these interpretive and cognitive theories as
methodological tools which can help the clinician understand their patient’s culturally
different health beliefs (Chavez, et al. 1995; Korbin and Spilsbury 1999; Browner, et al.
2003; Betancourt 2004; Fitzgerald, et al. 2008; Rosenberg, et al. 2005; Hasnain-Wynia
2006; Haidet, et al. 2008).
In the discussion section of these articles, authors typically suggested that
certain strategies be employed by clinicians to overcome these obstacles. What
constitutes a culturally competent communication strategy, though, is debated in
current literature. Many organizations and researchers use some variation of the
“LEARN” model from physicians Berlin and Fowkes (1983)17 to illustrate a step-by-step
approach of how to be culturally competent when treating immigrant or minority
patients:
• Listen with sympathy and understanding to the patient's perception of the problem • Explain your perceptions of the problem • Acknowledge and discuss the differences and similarities • Recommend treatment • Negotiate agreement
17See for example, http://www.diversityrx.org
101 Berlin and Fowkes (1983) adopted the LEARN model, in part, from medical
anthropologist Arthur Kleinman’s explanatory model approach. In this approach,
Kleinman (1980) recommended that clinicians use a series of questions to elicit the
patient’s model of the illness in order to engage in a process of treatment negotiation:
• What do you call the problem? • What do you think the illness does? • What do you think the natural course of the illness is? • What do you fear? • Why do you think this illness or problem has occurred? • How do you think the sickness should be treated? • How do want us to help you? • Who should be involved in decision making?
Some researchers have developed original theoretical models, which are partly based on the above meaning-centered theories, but add communication theories about the process by which clinicians move towards cultural competency. These models only focus on the role of cultural difference (Berlin and Fowkes 1983; Rogler, et al. 1987;
Brach and Fraserirector 2000; Wells 2000; Crandall, et al. 2003; Ferguson, et al. 2003;
Kagawa-Singer and Kassim-Lakha 2003; Eunice 2004; Reimann, et al. 2004).
Finally, a small number of theoretical models were more expansive in scope.
They suggested that clinicians and organizations be attuned to cultural difference as well as macro-structural factors such as poverty, racism and discrimination, hazardous work sites, and nutrition (Carrillo, et al. 1999; Hansen, et al. 2000; Purnell 2000; Stewart
2004). The notions of “culture” in these models were also more nuanced and complex as models assessed the degree to which patients were influenced by culture, acculturation, and ethnic identity. Figure 3.1, the Purnell Model for Cultural
102 Competence, is representative of models in this category; it is non-linear and incorporates certain variables as impacting health and health care: communication, family, work, nutrition, biology, risk behaviors, health care practices, religion, death rituals, pregnancy/childbirth, and biomedical and folk practitioners (Purnell 2000).
Figure 3.1 The Purnell Model
Thus, because disciplines, researchers, and organizations define and conceive cultural competency somewhat differently, practitioners find competing models. Not only does this make implementation difficult but it also stymies careful comparative
103 research (Brach and Fraserirector 2000). Further, most research articles do not provide
examples for clinicians on how to be culturally competent or how to apply theoretical
models in their everyday practice; out of 30 reviewed articles, only four included actual
case examples.
Cultural competence theories argue for practices implemented at the micro, or
medical encounter level, and at the macro, or organizational level (OMH 2001). Most
research conducted in the area of cultural competence, however, is at the micro-level of
the medical encounter and examines interpreter use, interpreter roles, patient
satisfaction, patient compliance, patient understanding, clinician satisfaction, and
cultural differences (for example, Baker, et al. 1998; Brach and Fraserirector 2000;
Elderkin-Thompson, et al. 2001; OMH 2001; Putsch 2002; Flores, et al. 2003). This body of research comes from university medical schools and other allied health departments and tends to be quantitatively driven and focused on one participant (patient, clinician, or interpreter). Such studies do not inform the qualitative dynamics of the communicative process, nor are they able to comment on the wider health setting organization or state and federal practices and policies.
Nursing Models of Cultural Competence
Because the majority of clinicians in this sample were nurse practitioners, it is important to highlight nursing models of cultural competence. My review of 40 research articles on cultural competence in this chapter included research from medicine, anthropology, psychology, social work, and nursing. For example, the Purnell
Model of Cultural Competence (figure 3.1) comes from nursing scholarship.
104 Without a large meta-review of the many hundreds of nursing articles written about cultural competence (the journal Transcultural Nursing alone listed 718 articles about cultural competence) it would be difficult to definitively describe qualitative differences, if any, among models of cultural competence in medicine versus nursing.
It is clear, however, that the nursing discipline has been involved with studying anthropological theories with regard to patient health since the 1960’s. Early milestones in the literature, such as Leininger’s Nursing and Anthropology: Two Worlds to Blend in
1970 and Brink’s Transcultural Nursing in 1976, not only disseminated early perspectives, but also demonstrated the influence of anthropology. Nursing scholars also highlight that in general, nursing curricula focuses more on the holistic elements that affect patient care than medical curricula (Chrisman 2007).What remains similar across medical professions is the agreement that more research is needed for the implementation and evaluation of cultural competence (Shen 2004).
Findings of Cultural Competence Research
A recent meta-review of cultural competence research findings concluded
(Schouten and Meeuwesen 2006):
• Minority patients do not receive as much medical information or explanation from clinicians as compared to Caucasian patients, • Minority patients do not understand their diagnosis or treatment plan as well as Caucasian patients, • Minority patients rate clinicians as less friendly and less concerned, • Minority patients think their comments are ignored by their clinician, • Results regarding encounter length with minority patients are inconsistent; some research finds encounters are longer while some are shorter,
105 • Minority patients are less adherent to their treatment plans than Caucasian patients.
Research also associates language barriers with the increased potential for
misdiagnoses and inappropriate treatment, the need for repeat visits, inadequate
informed consent, and dissatisfaction in the quality of communication and care among
patients and providers, among other outcomes (Elderkin-Thompson, et al. 2001; Flores,
et al. 2003; Simon, et al. 2004; Dysart-Gale 2005). These findings intensify the need for
ethnographic study and understanding of language barriers in health care.
The Role of Culture and Language
To re-iterate, as cultural competence theories gained popularity, analysis shifted away from the role of macro-structural phenomena in health, such as living in poverty, poor working conditions, environmental hazards, institutionalized racism, and an immigrant or refugee’s migratory and pre-migratory experiences (Hirsch 2003). Instead,
cultural competence theories in medicine became increasingly based on the assumption that differences in our respective cultures affect health status, treatment, and outcomes. “According to advocates for culturally appropriate care, traditional
biomedicine addressed individual, physical bodies apart from their cultural contexts,
wherein lies the “differences” (Shaw 2005: 292). Thus, while culture was neglected in
traditional biomedicine, it is now invoked as a scapegoat in conflictual medical
situations, especially those involving ethnic minorities (Fortin 2008, Sobo 2009).
The concept of culture in culture competence is similar to early anthropological
notions, that culture, as divorced from civilization, is something that others had,
106 something that could be counted and catalogued (Sobo 2009). Seen in this way, culture
is reified and considered as a concrete, bounded entity that exists in and of itself.
Current anthropology whole-heartedly rejects this understanding of culture as
representations show cultural boundaries as evolving, porous, and flexible.
Immigrant and minority patients are seen to be particularly “culture-driven.” In
fact, the literature overwhelmingly discusses cultural competence as a unique set of
actions necessary for minority patients only. For example, one nursing article explicitly
stated that cultural competence was something that physicians or organizations needed
to master for “appropriate relationships with ethnically diverse patients” (Eunice 2004:
94).
Some research focuses on the differences between cultural and biomedical
models with the view that patients’ cultural health beliefs are problematic and should
be changed to incorporate the biomedical model. For example, one medical researcher
stated, “Much of the challenges in blood pressure control in blacks have been ascribed to poor patterns of medication adherence and dietary indiscretion. Improving knowledge about hypertension, its treatment and complications has important implications for medication adherence and blood pressure control. Therefore, culturally relevant patient education materials are needed” (Boutin-Foster, et al. 2009: 144).
Cultural and linguistic differences of the patient, then, and not necessarily the culture of
the medical provider and institution, or other macro-structural barriers, became
incorporated into the medical model as an external influence that negatively affects
health care (Hunt and Arar 2001; Santiago-Irizarry 2001).
107 Further, a recent meta-review of cultural competence research found that most studies do not incorporate independent variables other than patient race, ethnicity, or language preference, making it difficult to understand how other variables beyond these may factor into medical communication and health inequalities (Brach and Fraserirector
2000; Schouten and Meeuwesen 2006). Quantification of multifaceted variables such as race, ethnicity, and language use, coupled with a lack of inclusion of other variables such as health beliefs, structural and social inequality, and a method of direct observation, has resulted in “an atheoretical, purely descriptive research field” that cannot inform
“any possible explanatory mechanisms for communication problems” (Schouten and
Meeuwesen 2006: 29).
Because variables such as culture, race, ethnicity, language and health beliefs are often treated as straightforward and one-dimensional by researchers, some misconceptions can be imparted to clinicians about these phenomena. For example, cultural competence models define culture as something that minority or immigrant patients’ posses; Caucasian middle-class patients, on the other hand, are treated as acultural and represent the standard of “normalcy” (Santiago-Irizarry 2001; Hunt 2005;
Hunt and de Voogd 2005). Since culture is often portrayed as a foreign, static entity, nursing students at the People’s Clinic often assumed they must use a different set of communication strategies for immigrant or minority patient in the clinic.
A slide from a cultural competence presentation at a UCLA medical school workshop illustrates some of these stereotypes (figure 3.2), in this case, how cultural or
108 traditional frameworks compare with medical frameworks.18 The “Other” patient’s culture is portrayed as timeless, homogenous, closer to nature, and slow, while the biomedical culture is active, helpful, and treats everyone the same.
Figure 3.2 Slide from Cultural Competence Workshop
Consequently, while cultural competence research may be useful in identifying and pointing out problematic areas, three major critiques prevent this model from widespread acceptance across disciplines. First, it is too focused on the micro-level of patient encounters and patient cultural difference and does not investigate the wider health care environment and macro-structural barriers. Fortin’s ethnographic study of a hospital pediatric ward showed that, “conceptualizing the Other as an individual, outside his or her social environment, isolates the latter from the conditions that produce inequalities in healthcare” (2008: 183).
18http://hr.healthcare.ucla.edu/Download/Cultural%20Diversity%20and%20Health%20Care.ppt
109 Second, the quantitative scope too often ignores the ethnographic context;
studies do not incorporate multiple methods such as interviews or observational data of the medical encounter. Quantitative data gathering techniques can only succeed if they are carefully attuned to specific cultural and environmental conditions, local languages, and other features (i.e., the emic perspective) that are discovered primarily through ethnographic research. Numeric data additionally needs descriptive, qualitative data to aid in analysis and hypothesis-generation (Pelto, Bentley, and Pelto 1990).
Third, research and subsequent applications of findings treat multifaceted variables such as culture, race, ethnicity, or health beliefs as one-dimensional. Since culture is always evolving, culture must be contextualized as a phenomenon that covers a wide set of values, beliefs, and ways of being that are meaningful within a particular relational and historical context. Like ethnicity, culture is not inherent but constructed in a particular environment and may be enacted differently according to the context
(Gaines 1992). Medical anthropologist Linda Hunt studied how the concept of culture was used in health research and wrote in the Lancet that “these studies almost never include indicators of the specific cultural traits in question, but instead assume that by knowing someone’s ethnic identity or national origin, their beliefs and behaviours [sic] can reliably be inferred…Attributing variable health-outcomes to unexamined cultural differences requires several major leaps of faith” (Hunt 2005). This lack of attention to culture as a multifaceted variable in cultural competence models is mirrored in the data collected at the People’s Clinic that shows that clinicians have a difficult time dealing with differences in cultural health beliefs.
110 The remainder of this chapter examines the cultural competence model in
comparison to the People’s Clinic practices. While the clinicians did not verbally define
their actions in relation to a specific model, their views were in line with a more holistic
understanding of the factors affecting patients’ health, rather than a model that solely focuses on cultural health beliefs.
II. Micro-level Cultural Competence in the Encounter
Step 1: Clinicians’ Understanding of Culture
Cultural competence focuses specifically on clinicians’ knowledge of the values
and belief systems of diverse cultural groups and their impact on health care access and
utilization. The first step in cultural competency asks clinicians to be self-reflexive of
their own culture and cultural biases in order to understand how the culture of their
patient may bring a different set of beliefs and experiences to the encounter.
Based on my observations and interviews, nursing students tended to hold
stereotypical or superficial understandings of the concept and role of culture in health
and illness. For example, one young female nursing student gave the following answer
when I asked her what she learned about the role of patients’ cultures on health from
her time at the clinic.
“For instance, if you have blonde hair and green eyes or blue eyes and touch a baby of Hispanic culture you can give them mal de ojo(the evil eye). So when I went up to a kid and told the parent, “You have a cute kid,” they said, “Ugh.” Now I won’t say how cute they are. Or if I was assessing the baby, after a while, when I built a rapport, I would complement maybe the smarts of the baby and not that they were cute.” [interview with female nursing student]
111 In a second example, a nursing student talked about gendered cultural stereotypes.
At the end of the day, during the debriefing session, Mr. Kendall (the preceptor) asked the nursing students, “Did anyone see cultural differences today?” One student answered that there were more females than males at the clinic, but then said, “I didn’t see a male make a decision for a woman.” [field notes 10-18- 06]
Thus, I observed nursing students project timeless cultural stereotypes upon patients without really asking the patients whether they believed, for example, if strangers could give their children mal de ojo (the evil eye) just by complimenting them.
To many nursing students I observed, culture beliefs often represented a set of stereotypes about what a certain group thinks, “or a bunch of rules about how to deal with “them,” like so many specialized tools to be stashed in a briefcase and trotted out each time one of “them” shows up…” (Taylor 2003: 179).
During afternoon debriefing sessions, but especially at the orientation session on the first day of the clinical rotation, Mr. Kendall, the clinical preceptor and clinic medical director, oriented the nursing students towards an awareness of cultural difference between the patients and themselves. Concurrently Mr. Kendall pointed out that all patients, American and Mexican, come with a cultural background.
At orientation Mr. Kendall asked the students, “What is different and the same with Mexican and American patients?” One student said, “They rely more on family and on traditional methods of treatment.” One student stumbled over the word curanderos (traditional healers). Mr. Kendall said, “But that’s no different than anyone. There are differences of opinion regarding traditional healers. But who is the definer? What is a culture bound syndrome?” He said that anorexia nervosa was an American culture bound syndrome and from the students’ expressions, it seemed that some of them were surprised that Americans can have culture bound syndromes too. [field notes 8-23-06]
112 Compared to the nursing students, family nurse practitioners (FNP) verbalized the importance of culture on health care at a more holistic level. My observational data show that most of the FNPs at the People’s Clinic talked about the general role of culture in health care with one another during the course of a clinic day and during interviews with me. For example:
“Culture is like my glasses, my first view is my own culture and then I have to see the patient and their glasses, their culture. We’re like looking at each other through these glasses and it’s worth recognizing that hey, we have these glasses on.” [interview with Mr. Mills, FNP]
Mr. Mills’ quote was representative of the family nurse practitioners’ awareness that patients’ cultures represent a lens from which health and illness experiences are mediated; few relied on cultural stereotypes as a guiding framework. However, having this view of culture did not necessarily facilitate clinicians to incorporate culture in the medical encounter. How might clinicians move from awareness of the importance of culture to specifically asking about it and utilizing it in the medical encounter?
Step 2: Eliciting Patient Agendas and Health Beliefs
Whereas traditional approaches to cultural competence relied on the clinician memorizing lists of stereotypical beliefs and practices of a particular group, more recent approaches use patient-centered strategies as a model. This model of care is explicitly used, for example, in the American Medical Association’s Cultural Competence
Compendium (Hedrick 1999). Patient-centered care is often defined as the degree to which clinicians ask detailed and open ended questions, elicit patient questions, educate patients, test for patient understanding, elicit the patient’s explanatory model(s) of his or her illness, build partnerships by asking for patient’s opinions and expectations, and
113 negotiate treatment plans (Rivadeneyra, et al. 2000; Roter and Hall 2004). Patient-
centered styles are particularly advocated in situations in which the patient has a
chronic illness and in situations in which ethnocultural beliefs about illness may play an
influential role (Harwood 1981; Kleinman 1988). 19
Generally, family nurse practitioners asked many open ended questions, elicited
patient questions, and provided educational information to patients. They were much
less likely to test for patient understanding (which is especially important when using an
interpreter), elicit explanatory models, discuss cultural differences, and negotiate
treatment plans.20 Many clinicians asked for patient agenda items and began the
encounter with open ended questions such as “How can I help you today?” or “What
brings you here?” Fewer clinicians also elicited agenda items throughout the encounter
although Mr. Mills (FNP) would routinely ask, “Anything else I can get you?” at the end of the encounter. Moreover, explanatory models were rarely discussed by patients or clinicians. The patient’s explanatory model was verbalized in four of the thirty recorded encounters, or in 13% of encounters. Two of these encounters involved differences in the patient’s and clinician’s health beliefs. In these cases, the clinician’s inability to fully
incorporate the health belief resulted in an encounter in which participants were
unsatisfied and patient agenda items were not met.
19 Some patients in this study did not respond to a patient-centered style of communication and did not participate in informal conversations and treatment plan negotiations with the clinician (see chapter 5). A patient-centered approach is arguably rooted in Western notions of patienthood and may not be the desired style by all patients. 20 Patients at the clinic for a routine medication refill arguably may not need to negotiate their treatment plan at each visit.
114 The following excerpt with Mr. Mills and a Spanish-speaking female patient
illustrates how patients discussed their agenda items and explanatory models and how
clinicians negotiated a treatment plan. This patient had been to the clinic before
although this was the first time that she and Mr. Mills had met. This medical encounter
was observed but not recorded and the data for this excerpt is from field notes.
M=Mr. Mills, FNP P=patient
M: “How have you been?” P: I have allergies. M looks through the chart and then said, “Tell me about, you’re sneezing?” P: Yes, I have to sleep sitting up my allergies are so bad. M: “And you have headaches too?” P: Yes and throat pain. Sometimes I get dizzy because of the headaches.
The patient took an empty bottle of medicine from her purse and told Mr. Mills that two years ago she got this prescription at the clinic and it really helped. But she was out and she would like them again. She gave the bottle to Mr. Mills. They talked more about her symptoms.
M: “It sounds like you have allergies.” This is said in a joking manner because it is obvious that this was what she had. P: “Yes, I know.”
Mr. Mills talked about nasal sprays and then asked, “How do you feel about them?” He used the Nasanox21 education poster on the wall to tell her about allergies, the inflammation process, and how the new sprays worked to decrease the inflammation. Mr. Mills asked, “So would you be interested in trying this?” The patient said that she used one before and it didn’t work. Mr. Mills asked if she would like to try another one. Patient said yes, she would try a different kind, but she also asked if she could have pills too. She then said, “What you just explained, I feel it” referring to the inflammation of her entire face.
In this encounter, the patient immediately told Mr. Mills her explanatory model, that she had allergies based on the fact that she had these symptoms before. She directly asked for a specific allergy medicine and even brought the pill bottle from a
21 Nasonex is a nasal spray for indoor and outdoor allergies.
115 previous visit at the clinic. Using these direct statements is a rare strategy for a patient
because it places the diagnosis and prescribing power in the hands of the patient
instead of the medical professional (Ainsworth-Vaughn 1998). Mr. Mills picked up on
this and commented on the strategy by making a joke when he said, “It sounds like you
have allergies” to which the patient replied, “Yes, I know.” Mr. Mills recommended a nasal spray to decrease inflammation and headache and he negotiated this with the patient. The patient responded that she did not want a nasal spray but when Mr. Mills recommended it a second time, her answer was deferent. She answered respectfully that she would try a nasal spray again but she also asked for the pills as well.
This encounter represented one in which the patient voiced her agenda, explanatory model, and treatment preferences. The clinician acknowledged these items, provided educational information about allergies, and negotiated a treatment plan. In an encounter where clinician and patient verbally shared their explanatory model and ideas about treatment and agreed upon them, the communication styles were participatory and tended to include joking or other ways of making the discourse more relaxed, and participant’s agendas were met. However, when explanatory models and ideas are verbalized by patient and clinician, but differ, communication may break down.
Step 3: Engaging Cultural Health Beliefs
I observed that cultural differences were less tangible, or real, for clinicians to understand and manage than linguistic differences. For example, a few times Mr. Mills
(FNP) asked his patient what he or she thought was wrong in an attempt to elicit
116 information from the patient’s point of view. Most of the time the patient would
respond with, “No se” (I don’t know), but on one occasion the patient offered his
explanatory model that included a hot-cold imbalance. Mr. Mills listened attentively,
did not correct the patient, but then reported to me after the visit that he did not know
how to apply the information he had elicited. Other clinicians also reported that they
did not know how to “use” the cultural health information they received from patients.
This is most evident by a patient I observed with Mr. Kendall (FNP):
One of the patient’s reasons for coming to the clinic is his nervios. Mr. Kendall asked him how he came to have nervios. Sr. Lopez said that on a really hot day in August he was pushing his ice cream cart down the street (his job). He drank a cold coke and got the illness. Mr. Kendall prescribed an anti-depressant and told me after the encounter that nervios was a cultural idiom and probably translated into anxiety. The student-pharmacist asked what to put on the medication label in the place indicated for diagnosis; she asked, “Should I put depression?” Mr. Kendall said, “No, put ansiedad (anxiety). Better yet, don’t put anything.” [fieldnotes 9-29-06]
In this encounter, Mr. Kendall elicited the patient’s own definition and etiology of the illness; the patient said he had nervios from drinking a cold coke on a hot August day. However, as he was constrained to prescribe medication, Mr. Kendall mapped the patient’s cultural idiom of distress, nervios, onto a Western diagnosis of anxiety.
Mr. Kendall’s beliefs and actions represent a key debate amongst clinicians and anthropologists, whether illnesses are universal with only the content (symptoms) affected by culture or whether illnesses are culturally relative. Universalist theories, especially as espoused in biomedicine, distinguish between the form
(pathogenic/biological processes of cause) and content (pathoplastic/cultural or personal variation of symptoms) of an illness (e.g., schizophrenia is a universal disease,
117 but the content or symptoms are culture specific). However problematic it is to
distinguish form from content in illnesses with no clear biological basis, this dichotomy
continues in medicine, and especially psychiatry (Littlewood and Dein 2000). Thus,
clinicians and researchers assume a priori that illnesses around the world fit into
Western nosologies and diagnoses, in this case, that the patient’s nervios can clearly be diagnosed and treated as anxiety.
Other occurrences of cultural differences were observed within the 30 recorded medical encounters. Two encounters contained differences in ethnomedical beliefs between the clinician and patient and the result of these encounters was unsatisfactory for all participants according to their comments in the post-encounter interview. Also,
in the post-encounter interview with this researcher, four patients described
explanatory models that contained cultural etiologies of their illness and four patients
described models that contained a mix of cultural and biomedical etiologies. This
information will be discussed in detail in Chapter five.
A recent study illuminates the impact of explanatory models on treatment
decisions in medical encounters. Browner, et al. (2003) determined that the decision by
Mexican women in the U.S. to decline genetic testing during pregnancy often resulted
from a lack of trust between provider and patient. There was a statistically significant
correlation between the decision to decline amniocentesis and the women’s
understanding of what the test meant. Additionally, the clinicians in the study exhibited
a reluctance to directly address “mistaken” cultural beliefs of the patients. While these
clinicians elicited the patient’s views and explanatory models regarding the testing, they
118 failed to engage in an information sharing dialogue that may have resulted in both parties gaining a better understanding of the others’ views.
Explanatory models have also been shown to correlate with patient medication adherence. In a study about hypertension with African-American female patients from
New Orleans, researchers found that there were two distinct illness models for patients with hypertension, “high blood” and “high-pertension.” The women with “high blood” felt their blood was thick due to frequently eating fatty foods; these women took their medicine regularly. On the other hand, women with “high-pertension” did not believe their illness was chronic and only took their medicine when they felt a “pertension” attack caused by sudden emotion such as anger or anxiety (Heurtin-Roberts and Reisin
1990). Though the researchers did not collect data from the medical encounter, and thus cannot speak to how participants communicated their health beliefs to one another, we can appreciate how a conversation between these patients and their clinicians may have enlightened and supported participants’ health care decisions.
At the People’s Clinic, cultural health beliefs also posed difficulties for clinicians outside the medical encounter. During 2007, two nurse practitioners wrote a type 2 diabetes training manual and intervention program for clinic patients. The manual contained four stages of information for patients and included a pre- and post-test at each stage. For example, one lesson was created for patients who had just learned their diabetes diagnosis; the lesson contained information about the disease and a suggested diet and exercise program.
119 Several “information sessions” were then held for promotoras and nursing
students as the primary implementers, however the intervention never succeeded. One of the main reasons for the failure stemmed from a lack of relevant information for this patient population. When promotoras read the lessons to the patients, I observed a noticeable lack of interest on the part of patients. The diabetes manual appeared to be written for health professionals rather than patients and did not include cultural health information that the patients spoke about during their interview with me, such as the role of bitter cactus tea or other herbs. Nor did it contain information about what seemed to concern patients most about having diabetes, a deep concern about death, hospitalization, diet, and a lack of money to purchase testing materials.
Thus, despite the importance and role of explanatory models, I found that when clinicians elicited them, they did not know how to use the cultural information they obtained. They did not know how to move beyond this phase to a meaningful dialogue and negotiation process. Since there is not a “correct” or one-size-fits-all response in
these encounters that clinician can memorize and utilize, they must be self-reflective
about their own cultural biases and understand that biomedicine is one of many
culturally-constructed ethnomedicines. They should be aware of cultural differences,
non-verbal communication, the role of interpreters, and other factors at the macro-
structural level that may affect health. And lastly, they should understand that some
patient-centered strategies such as negotiating a treatment plan may not be how all patients see their role in a health care setting.
120 III. Macro-level Cultural Competence
While cultural competence models advocate for clinicians to understand cultural
attitudes, beliefs, and practices of their patients, the People’s Clinic focused equally if
not more so on macro-level concerns in their patient’s lives. For example poverty, low
educational levels, low health literacy, lack of understanding the U.S. medical system,
and work related issues were seen as influencing patient health. Cultural factors were
not ignored, but perhaps mirroring the patient’s primary concerns of money and
joblessness as evident from their narratives in the medical encounter, other factors
were believed to be interrelated and as important, if not more important, than culture
to health.
An example of attention to socioeconomic issues transpired when Mr. Kendall,
the medical director and clinical preceptor, taught nursing students about the clinic’s
patient population. Because the typical nursing student did not have similar religious,
economic, or racial backgrounds as the patients, Mr. Kendall consistently tried to orient
them to the lifeworlds of the patient. In doing so, he emphasized poverty and the type of job one holds as being related to health.
During Mr. Kendall’s debriefing at the end of the day he said how important it is to teach mothers how to help their child succeed in school. “The fact is that rich people get sick, but it’s unhealthy to be poor.” He then linked the type of work the typical patient does with difficulty accessing services. Mr. Kendall told the group for example that the People’s Clinic is the only clinic in the city open on Saturdays for immunizations. “Texas has the worst problem with access…if you have to work every day and will get fired for taking time off, wouldn’t you need to get your child immunized on the weekend?” [field notes 8-23-06]
The clinic’s pediatric nurse practitioner also advised the nursing students to be
aware of the role of poverty in the lives of patients. One afternoon a nursing student
121 came into the pharmacy where other students and I were sitting. She complained about
a frustrating encounter in which the patient did not appear to be taking his medicine.
The pediatric nurse practitioner provided advice to everyone in the room.
“I occasionally know that people don’t adhere to my recommendation or I get annoyed that they don’t come back for follow up, but I understand from having worked for so many years with people who are impoverished that their priorities and mine are very, very different. They aren’t gonna match up no matter what. I don’t go home to no A/C, or plumbing that may be bad, or inadequate food, nasty land lords. I don’t go home to that.” [field notes 9-26-07]
Mr. Kendall also explained to the students that many patients had difficulty in
understanding the U.S. health care system. Often, the social worker helped clinic patients make an appointment for a special test or access a better-equipped clinic. She did not do this because patients literally could not call themselves, but because the bureaucracy at many of these clinics made it almost impossible for patients to navigate their systems. Mr. Kendall said:
“The world is full of people who don’t know how to use their insurance. It’s tragic that people pay for it but they don’t know how to use it. This insurance system is all set up by white upper-class people and other people don’t resonate with it or don’t understand it. We find with our patients, they may have access to the county hospital, but they can’t call to make an appointment.” [field notes 11-2-06]
Nursing students were challenged to think about the choices that many migrants face, often leaving loved ones behind to make better lives in the long run for their families. For example, Mr. Kendall, the preceptor, also stressed good communication to the students, not by using interpreters or speaking Spanish, but treating people with respect.
“Interactions are characterized with warmth but also with respect. This is Mrs. X or Mr. X. This is a 40 year old woman who has made it across the desert walking,
122 not Maria, but Mrs. Garcia…The unpardonable sin here is disrespect for patients. We see different people with all kinds of strengths and backgrounds. Who was with me with that woman who left her two-year-old baby in Mexico to come here and make a better life for them? You have to respect that.” [field notes 8- 23-06]
Thus, while cultural issues were discussed, Mr. Kendall and other clinicians
stressed that other forces, such as poverty, can also be barriers to health care.
Interpreters should be used to facilitate communication, but it is just as important for
students to convey respect for patients through their communication style.
In fact, the understanding of macro-level barriers faced by patients spurred the
family nurse practitioners to volunteer week after week, treating patients and teaching
the next generation of nurses:
“The clinic helps me to live my values in a meaningful way, that’s what motivates me” said Mr. Mills (FNP). When asked, what values, Mr. Mills said, “I value social justice, I feel everyone deserves basic rights, like a healthy life, and I can help in that way….Like for the students, the Mexican immigrants can easily become a nameless entity you read about but volunteering at the clinic makes it personal.” He said there was a common theme in vulnerable populations and while he couldn’t erase the disparity, he wanted to do what he could to give them the best chance to succeed. “I feel that with immigrant populations, they have so many barriers: access, taking off work, paying for health care, that I spend probably more time than I should with them. I want to give as much as I can.” [interview with Mr. Mills, family nurse practitioner]
A similar sentiment was provided by a second nurse practitioner:
“So I actually, as I came of age and I was in my last year of college and my first job, I just developed a philosophy of health care as a right and so everyone deserves it and there should be no strings attached. And so I always had a problem with the bureaucracies who have these intentions and entanglements and limited access to care, blocks, obstacles and everything else.”[interview with female pediatric nurse practitioner]
123 Community Participation
In Mr. Kendall’s belief, an extension of being a competent community health
practitioner included participation in the local community and seeing patients in their
home environments. The student clinical activities reflected this belief through
involvement in weekly education classes for new immigrants at two local elementary schools [photo 1], bi-annual health fairs [photo 2], and home visits to “needy” patients including visits to Mexican immigrants and recent refugees from Burma and Sudan
[photos 3 and 4].
Photo 1: A promotora and nursing student lead a health class at the local elementary school
124 Photo 2: A health fair booth
Photos 3 and 4: Clinic outreach to refugees
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Nursing students were significant partners in these community participation programs. Afternoon debriefing sessions were used as a way to discuss and digest what they learned from observing and treating people in their own community setting. In short, community participation was the best method, in the opinion of this researcher, for training students about the role of cultural differences and macro-structural forces on health. Students often told me they had learned about these issues in their classes, but to observe, first-hand, the complex relationships between culture, poverty, poor working conditions, environmental hazards, institutionalized racism, and migratory and pre-migratory experiences in an individual or family was a very powerful learning method for them. In support of my findings, one recent study of 134 clinicians found that hands-on participation in educational experiences correlated with an increase of cultural knowledge and awareness (Reinmann, et al. 2004).
Case Study of Community Participation
The following case study is an exceptional example of how the clinic’s outreach activities provided culturally sensitive health-related assistance to a refugee family. The data was drawn from observation notes over several months in the summer and fall of
2007, as clinicians, nursing students, and the clinic social worker aided a specific refugee family from Sudan.
Salma and her brother Ahmed, both refugees from Sudan in their late 20’s, first came to the clinic in August 2007. They each had a medical problem and heard from other refugees that the People’s Clinic was a trusted place to get care in the community. Both spoke English fairly well which was good because the clinic did not have an Arabic translator. Salma had a swollen arm which was too severe
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for the clinic to treat and the clinician referred her to the ER for an x-ray; Ahmed told the social worker that he was having trouble sleeping and that he could not concentrate well enough to read a page in a book and understand what it said. He said, “This is America, don’t you have pills to make me smarter?” Ms. Kendall, the social worker, laughed and said if they did, she’d be taking them. He said that he was on Seroquel22 and Ms. Kendall asked who prescribed them. He said the name and Ms. Kendall recognized the person as a psychiatrist at a local center for torture survivors. Since none of the family nurse practitioners at the People’s Clinic felt comfortable prescribing antipsychotic medications, Ms. Kendall called the center and made him an appointment to see the psychiatrist who prescribed the medication.
Two weeks later Ahmed came back to the clinic and gave the same symptoms. He had missed the appointment at the other center and the social worker asked Ahmed if he felt comfortable with the other psychiatrist or if he wanted to be seen next week by the People’s Clinic’s psychiatrist. He said he wanted to come to the People’s Clinic and she made him an appointment.
Mid-morning on November 21, 2007, Ahmed walked to the clinic to talk with Mr. Kendall (FNP and clinic medical director). He said that his sister was in terrible pain, that she could not move and he asked if someone could come to their apartment. Mr. Kendall asked me and two nursing students to go. They lived in the same apartment complex a few blocks away where a lot of refugees lived. It was an old complex, the swimming pool was “open” but the water was low and dirty and there were many large cracks in the concrete around the pool. Their apartment was on the first floor by the pool; it was small and the only furniture in the living room and dining room were two old couches. There were no lights in the room except for a hanging light in the small kitchen area.
Salma was sitting on one of the couches, the nursing students and I sat on the other couch. Ahmed paced around and eventually stood in the doorway between the living room and bedroom. Salma looked like she was in a lot of pain, her body rigid. She explained that she moved a heavy couch at work two months ago and hurt her back and it had been steadily worse for the last three weeks. The nursing students gave her the naproxen23they brought with them and said to take it with food. Salma said she had not eaten recently because she had no appetite and she hadn’t slept in two weeks. The nursing students asked about Salma’s job and she said she worked at the large local research hospital on the cleaning crew, the very hospital where their School of Nursing was located,
22 Seroquel is a “second generation” antipsychotic medication and treats bipolar disorder and schizophrenia. 23 Naproxen is an over the counter anti-inflammatory medication. 127
but Salma said they did not offer health insurance to their maintenance or cleaning people.
I asked Salma what she did in Sudan and she said that she had a bachelor’s degree in medical equipment and technology and had worked at a large clinic. When I asked why she was working on the cleaning crew she said that was the only local job she could find. We talked to her about workers compensation and she said that she was denied workers comp and even got a letter, but then yesterday someone called and said that she had an appointment next week with a worker’s compensation doctor. Salma did not know where or what time. She asked if someone could take her because she physically could not get on the bus.
Eventually the students examined Salma’s back and they found a large knot next to her spine. It looked extremely painful. We left after about 20 minutes to consult with Mr. Kendall and Ms. Kendall about what to do. As we left, a man and woman knocked on the door; they were cousins, also refugees from Sudan, who lived in Colorado. They were worried and came to help. They said they wanted to take Salma to the ER and the male cousin and Salma’s brother followed us to the clinic to speak to Mr. Kendall directly. Mr. Kendall advised them to go to the hospital where Salma worked and ask for at least an x-ray.
A few days later I got an email from Ms. Kendall, the clinic social worker and executive director, which said Salma had breast cancer and that the cancer had metastasized to her back. I went to visit her in the hospital two days later. Salma was really angry because the oncology doctor told her the diagnosis in front of her brother. She said her brother was very fragile, had PTSD and psychosis, and she didn’t want him to know because he would be really upset. Later that week Ms. Kendall called me and said that the cancer had spread to Salma’s brain and she only had a short time to live. This was very upsetting news to me and all the clinicians who knew the brother and sister. Immediately, Ms. Kendall worked to get her hospital bill waived and to set up hospice care so Salma could go back to her apartment.
Two nursing students and I visited Salma weekly for the next three months. The students helped Salma’s brother and female cousin who had temporarily moved in, and worked with the hospice nurses. Whenever I visited, Salma’s cousin did not want me to talk about the cancer in front of Salma nor did she want the hospice nurses to talk to her about what she should expect to happen as she died (in terms of pain management and expected course of death). In the last few weeks, members of the local mosque contributed enough money for a plane ticket and VISA so that Salma’s mother could come from Egypt. A Muslim social worker from the mosque helped the family with funeral arrangements at a local
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Muslim cemetery. After Salma died, her mother returned to Egypt and Ahmed moved to Colorado to live with his cousins.
Salma and Ahmed’s circumstances were incredibly sad and challenging to absorb. Looking back on my field notes with temporal distance, I can see how the situation exemplified the caring, respect, and hard work on the part of volunteers at the
People’s Clinic. The nursing students learned firsthand how biology, culture, poverty, poor working conditions, and experiences being tortured combined to create Salma and
Ahmed’s circumstances. Salma was a relatively skilled refugee with a university degree whose lot was to work as a cleaning woman at a major research hospital. She did not receive health insurance from this hospital because she was considered a contract laborer. She thought her back pain resulted from an injury on the job, so she was never examined because of a lack of insurance, and died from breast cancer at 28. I do not suggest that health insurance could have prevented Salma’s death had she been seen earlier, but she may have been more likely to take advantage of routine preventative care such as regular breast exams.
Through cases such as this, nursing students and other volunteers learned first- hand about cancer and hospice treatment, about religion, cultural rules about who has the right to know health information in the family, and cultural burial preferences.
Students also learned that working at a hospital did not guarantee access to health care.
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IV. Discussion
While cultural competence and the reduction of linguistic and cultural barriers
have their necessary place in research and advocacy, macro-structural factors can
overwhelm these efforts. For example, Chavez and his research team (2003) attempted
to implement an intervention program for breast and cervical cancer awareness for
Latina women based on their findings about cultural health beliefs. In the end, Chavez expressed doubt about how much his knowledge of cultural differences could really help the women:
“Although it may have effectively changed beliefs and behaviors of individuals, it did nothing to alter the structural obstacles encountered by Mexican immigrant women, and other low-income people, when seeking medical services…we could do nothing about the cost of medical care, financial screening, lack of medical insurance, English language skills, and immigration status…we realized, with frustration, that only fundamental changes in embedded societal inequalities would have a real and lasting impact on immigrant’s lives and well-being” (Chavez 2003: 225).
Therefore while most researchers and health advocates tout cultural
competence in medicine as a major step in the right direction for immigrant and
minority health, anthropologists who study this movement believe that cultural
competency discourse can result in blaming “culture” for ill health (Lazarus 1988;
Santiago-Irizarry 2001; Hirsch 2003; Taylor 2003; Hunt 2005; Shaw 2005). Hirsch (2003)
wrote that both our theoretical and applied work has been stymied by an over-
investment of the importance of cultural differences in medical anthropology and she
argued that more attention be paid to the broader structures of knowledge that serves
some and silences others. 130
At the People’s Clinic, practices reflected a certain understanding of linguistic barriers, cultural differences, and the role of macro-structural barriers. While family nurse practitioners did not verbalize a specific theoretical model related to cultural competence, they had a general awareness of the role of culture on health care and illness. Their views on medicine as a right for all people motivated them to volunteer week after week and to teach the next generation of nurses. Cultural competency and attention to the role of macro-structural barriers could therefore be a mechanism to ensure the observance of patient rights, such as the right to respect and nondiscrimination. Nursing students, on the other hand, often spoke about how much they learned from a hands-on application both in the clinic and with community outreach activities.
Although nurse practitioners understood the role of culture, they were less proficient at incorporating cultural health beliefs into their practice. Chapter five provides an in-depth examination of these types of encounters. But first, Chapter four introduces the dynamics of a cross-linguistic and cross-cultural medical encounter, with specific attention paid to the way participants provide medical and lifeworld information.
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Chapter Four: Case Studies in Cross-Cultural Medical Communication
This chapter is an ethnographic analysis of communication, a detailed look at
how information is shared within the encounter. Chapter five will provide an analysis of the content and type of information shared across the 30 encounters.
Utilizing two representative case studies from the 30 recorded medical encounters, this chapter illustrates how participants of these encounters provide information to one another and how that information is used in subsequent treatment actions. Because the medical encounter and the wider clinic environment are negotiated spaces where social, cultural, and structural relations are played out, case studies provide detailed snapshots of the ways patients, clinicians, and interpreters fulfill their sociolinguistic roles of securing and providing health care. Specifically, the case studies indicate the dynamics of a cross-cultural and linguistic clinical encounter, how treatment decisions are made from the information shared within the encounter, and the methods used to exercise power and control to either prevent or encourage
information sharing.
An examination of encounters as linguistic case studies articulates how major
communication strategies work simultaneously with one another. Linguistic studies that
only examine the space of the medical encounter and not the clinic environment, or
that only analyze one type of speech activity in order to understand communication
strategies and power, such as questions, interruptions, or topic transitions, are
incomplete because they ignore not only the ethnographic context but how each 132
strategy works in tandem with others.
I. Patient-Centered Encounter/Mutual Lifeworld (encounter 30)
The first case study took place between a 65 year old man from Mexico, Señor
Hernandez, and Mr. Mills, an Anglo family nurse practitioner who was 36 years old.
Luisa was the promotora; she was in her early 30’s, was a first generation Mexican-
American, and lived close to the People’s Clinic. Luisa took the patient’s vital signs
before his visit (i.e., took his blood pressure, blood glucose level, weight, and chief
complaint). This was the first time Señor Hernandez and Mr. Mills had met. Señor
Hernandez had type II diabetes, high cholesterol, and high blood pressure and he had
been a patient at the clinic for almost 4 years. This encounter was exemplary of a
cooperative venture with participants working together to have good and clear
communication. Señor Hernandez provided a substantial amount of health and
personal information, Mr. Mills used numerous open-ended questions to encourage
participation, and Luisa worked as a team member with Mr. Mills to ensure accurate
interpretations and further, served as an advocate for Señor Hernandez.
Prior to this visit, I observed Mr. Mills 19 times and Luisa 27 times, and thus was familiar with their styles, both individually and how they usually worked together. Mr.
Mills was typical of a clinician with a “patient-centered” style of treatment, meaning he asked many open-ended questions, tended not to interrupt patients, provided verbal cues to show he is listening (“mhmm” or “yeah”), and invited patients to participate in their treatment plans through a process of negotiation (Rivadeneyra et al. 2000; Roter
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and Hall 2004). He also spent time providing educational information to patients and frequently drew diagrams on the exam table paper to show various disease complications or treatments (e.g., drawing the concept of blocked arteries or showing how a nasal spray works).
Señor Hernandez was unlike the typical male patient at the clinic as he provided a great deal of information to Mr. Mills and Luisa about his medical and personal issues.
Several times he demonstrated his knowledge and competence as a patient, understanding that he had three major chronic diseases. As a patient of the People’s
Clinic for a number of years, he was familiar with the routine of the clinic, including being familiar with the lack of continuity between clinicians and patients. The fact that he was a regular patient may have contributed to his active participation in the medical encounter (Ainsworth-Vaughn 1998). Señor Hernandez’s participation was also unusual in relation to the literature on minority patients; Roter, Hall, and Katz (1988) show that minority patients receive less information, ask fewer questions of the clinician, and receive fewer positive comments than Caucasian patients (see also West 1984).
The ethnographic context of this case study informs the qualitative data that contextualizes the subsequent discussion of cross-cultural and cross-linguistic communication. Transcription notation can be found in Appendix II.
Total time: 41:41 med encounter: 30:30 my interview: 11:11
Excerpt 1(beginning of encounter)
M=Mr. Mills, FNP L=Luisa, promotora P=Señor Hernandez, patient
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M: Señor Hernandez. P: A-huh. M: ¿Hablas inglés? Do you speak English? P: No. M: No, no hablo mucho. Un momento. Ay. (….) No, no I don’t speak much. Wait a second. Ay. M: Sabes Luisa y Marisa?Okay. Alright. You know Luisa and Marisa? ¿Cómo está usted? How are you? P: Bien. Good. M: Ah, so what can I do for you today? L: ¿Que qué puede hacer por usted ahora? What is it that he can do for you today? P: Pues que me de la medicina. Well he can give me the medicine. L: Just give him the medicine. M: Okay. How has everything been? L: Dice que cómo ha estado todo? He says how has everything been? P: Bien. Good. L: Well. M: Any problems with the medicines? L: ¿Algún problema con la medicina? Any problem with the medicine? P: No, no, ninguno. No, no, none. [ L: No.
This encounter began with Mr. Mills immediately speaking to Señor Hernandez
in his native language. Mr. Mills used Spanish to find out whether Señor Hernandez
spoke English and to ask for a moment so he could bring in an interpreter. Mr. Mills then used Spanish to introduce Luisa and me. Even after the interpreter was present,
Mr. Mills used Spanish to ask Señor Hernandez how he was doing (“Como esta usted?”)
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and used the respectful form of the verb (usted), rather than the more familiar, intimate
form of the verb (tú).
As is common in biomedical encounters, the clinician initiated the medical inquiry (Mishler 1984; Fisher and Groce 1990; Wodak 1997). The initial question by Mr.
Mills is significant because it sets the tone of the encounter. In this case, an open-ended question, asked in the patient’s native language (“How are you doing?”), indicated a respectful invitation for the patient to provide information about how he was doing.
When Señor Hernandez gave a one word answer “good,” Mr. Mills asked another open- ended question, “What can I do for you today?” Señor Hernandez’s answer provided a very direct reason as to why he was at the clinic, “Well he can give me the medicine.”
None of Señor Hernandez’s answers to Mr. Mills’ questions added valuable information
(okay, good). This lack of information may be the reason Mr. Mills asked four open- ended questions in a row at the beginning (as noted in bold type). This type of opening, which includes introductions and four open-ended questions, is different from other encounters that are less open and participatory.
Patient Competence
Communicative competence, as discussed in Chapter one, is not only the manner in which individuals show they understand and perform the rules of communication, but competence is also fundamentally co-constructed in the process of interaction (Hymes
1972). Both patient and clinician occupy specific sociolinguistic roles in the medical interaction, and each participant’s role contains fairly rigid rules about his or her
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expected behavior. For example, the sociolinguistic role of clinician, as someone with more knowledge capital, is more powerful than the role of patient. Hence, clinicians tend to control the subject of conversation and the time in which patients speak. A patient, however, may control the medical visit, while staying within the “patient role,” by demonstrating that he or she is a competent participant in his or her health care
(Fisher 1998).
The next excerpt from this encounter demonstrates that Señor Hernandez is competent as a patient with diabetes, high blood pressure, and high cholesterol.
Excerpt 2 (1:49 minute)
M=Mr. Mills, FNP L=Luisa, promotora P=Señor Hernandez, patient
M: Cause your sugar this morning is still (..) pretty [ L: Dice que la azúcar todavía He says your sugar is still M: It’s still on the high side. [ L: Está alta. Is high. P: Es que casi recién me comí unos panes dulces con un refresco. It’s that I just ate some sweet bread and a soda. L: He had some ah, I guess pan dulce, a lemonade which had sugar, a soft drink. [ M: Okay, mhmm Okay, okay so you’re thinkin’ that maybe that that was the reason L: Usted piensa que esa es la razón por la que. You think that is the reason why. M: That sugar was high. [ P: x [unintelligible] L: Yes that’s the reason. P: Porque yo tengo un librito en el que he contado todos los días desde la
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mañana a la tarde. Because I have a notebook in which I have counted every day from the morning to the afternoon. L: He has ah a book where he’s point, ah writing down how much is the DFS and what is he eating. M: Okay so- [ P: Y a lo más me ha llegado a 200, no más. And it hasn’t gone beyond 200, not more. L: And the highest has been 200. M: Okay, and you’ve been doing that at home? L: ¿Y lo está haciendo en la casa? Are you doing that at home? P: Sí. Yes. L: Yes. M: Do you have the (..)? Did you bring the? [ L: ¿Trae el librito con usted? Did you bring the notebook? P: No, no lo traje. No, I did not bring it.
At the beginning of the excerpt, Mr. Mills told Señor Hernandez that his “sugar” was high this morning and in response, Señor Hernandez offered his explanation, that
he had a sugary drink and pan dulce, or sweet bread, that morning. Mr. Mills rephrased
what he just heard, either to show he was listening or to double check the information:
“So you’re thinkin’ that maybe that that was the reason.” And Luisa translated back to
the patient who confirmed, yes, that was the reason.
Mr. Mills’ rephrasing of this question is significant because it kept the topic
focused on what Señor Hernandez just said. During his “turn” to speak, Mr. Mills did not change the topic to move on to another medical question. He confirmed what he heard which allowed Señor Hernandez to have the floor, or control of the topic. Thus,
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Señor Hernandez offered even more information; that he regularly checked his sugar at home and kept a notebook of the results. The highest blood sugar number he had recorded was 200. Mr. Mills asked if he brought the notebook to the clinic, and Señor
Hernandez responded that he did not.
Interestingly, Luisa added medical jargon, which the patient had not used, when she interpreted Señor Hernandez’s statement for Mr. Mills. Her insertion of the medical term “DFS” (the blood glucose number) and re-phrasing of the statement from “Because
I have a notebook in which I have counted every day from the morning to the afternoon,” to “He has ah a book where he’s point, ah writing down how much is the
DFS and what is he eating,” changed what Señor Hernandez said and made it more congruent with “medicalese.”
The information provided by the patient, information that he kept a daily food journal and tested his blood sugar at home, carried certain implications for future expectations and treatment based on the amount of cultural capitol Señor Hernandez demonstrated in his patient role. For example, in a study comparing linguistic interactions and treatments for cancer in two women’s clinics, Fisher (1998) found direct correlations between a woman’s competence in her role as a patient and the physician’s treatment decisions between a hysterectomy and other less invasive options, such as cryotherapy. Notions of competency in Fisher’s study were often indexed by patient questions and knowledge about the illness, both of which “…have the potential to change the direction of the treatment decision” (Fisher 1998: 110).
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In this case example, the fact that Señor Hernandez provided information
showed more than his patient competence. Because he told Mr. Mills that 200 was the
highest blood sugar count, and that the lowest was 80, Mr. Mills did not increase his diabetes medicine despite the fact that the blood glucose level was high the day of this medical encounter.24
Another outcome that resulted from Señor Hernandez’s ability to demonstrate
high patent competence is that the clinician, Mr. Mills, verbalized his trust in the
patient. This excerpt is from the end of the medical visit.
Excerpt 3 (26:08 minutes)
M=Mr. Mills, FNP L=Luisa, promotora P=Señor Hernandez, patient
M: Anything else I can get for you? L: ¿Algo más que pueda (.) darle? Anything else he can (.) give you? P: Pues con esto estamos. We’re set with this. L: Just whatever is there. M: Okay, alright. Like I said, we’ll go up a little bit on your blood pressure medicine. L: Le va subir un poquito la presión, la medicina. He will increase a little the blood pressure, the medicine. P: mhmm L: En lugar de la mitad va a tener una entera. Instead of having half you’ll take it all. M: And then I’ll get all the stuff we talked about. L: Y todo lo demás le van a dar todas las medicinas. And everything else, they will give you all the medicine. P: Si, si. Yo lo tomo luego como dice ahí en el frasquito. Yes, yes. I then take it like it says on the box. L: Yeah, he takes them just exactly how it says. M: Absolutely, absolutely and I, I, I can’t, I’m not at your house, I don’t know,
24 The normal reading for a person’s blood glucose level is 80-125. 140
but I get that feeling from you that you’re at the point. L: Dice que él no sabe porque estás en tu casa pero el siente que sí te has tomado la medicina. He says he doesn’t know because you’re at home, but he feels you have been taking the medicine. M: That you’re doing those things to [ L: Y lo estás haciendo bien And you’re doing it well P: Sí entiendo Yes, I understand L: Yes he is doing it. M: I get that feeling from you for sure.
Wrapping up the medical encounter, Mr. Mills asked his usual open-ended
question, “Anything else I can get for you?” and Señor Hernandez said “no.” Mr. Mills
repeated the treatment plan a final time; he reminded Señor Hernandez which medicine
was changing, “We’ll go up a little bit on your blood pressure medicine,” to which Luisa
translated and then added “instead of having half you’ll take it all.” Señor Hernandez
offered that he takes the medicine as directed on the box and Mr. Mills replied that he knew Señor Hernandez was taking his medication as directed, that he was doing the right thing.
Providing Information through Narrative
The medical encounter primarily is an opportunity for clinicians and patients to provide information to one another, sometimes verbally communicated and sometimes nonverbally communicated though a physical exam or through nonverbal communication such as gestures, nods, or silence. Most of the literature finds that the information discussed during the encounter stays in the biomedical realm and that
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participants have difficulty discussing issues in the social, emotional, or personal realm, also known as the patient’s lifeworld (Mishler 1984; Waitzkin 1991; Barry, et al. 2000;
Barry 2002).
Chapter one discussed the beneficial reasons why clinicians are encouraged to talk with patients about the way in which their illness affects them in medical, emotional, and social ways. However, an inherent tension exists between the kind of information the clinician wants, needs, and tends to elicit. Scholars argue that clinicians need to hear information about the patient’s lifeworld to arrive at a correct diagnosis and treatment plan. Encouraging the patient to share this information may also increase patient trust, satisfaction, and create a sense of compassionate understanding.
Yet the majority of research shows that clinicians utilize communication strategies to prevent this from happening. Calls for a narrative-based medicine from within the medical profession further the argument that a scientific-based medicine alone cannot help patients cope with the meaning of their illness or loss of health (Brody 1987;
Kleinman 1988; Charon 2001). As one physician noted, “if physicians cannot practice with empathy, reflection, and trustworthiness… the patient might not tell the whole story, might not ask the most frightening questions, and might not feel heard” (Charon
2001: 1897).
The example below shows communication in a medical visit with three participants. After briefly talking about diabetes, blood pressure, and cholesterol, Mr.
Mills turned to the new medical complaint presented by Señor Hernandez: his painful
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knee. The following excerpts provide three points of interest: 1) Señor Hernandez offered many illness stories and personal information, 2) Mr. Mills spent time talking with Señor Hernandez about arthritis and treatment options, including drawing a diagram of the problem on the exam table paper, and 3) Luisa provided information to
Mr. Mills, without prompting, in addition to what Señor Hernandez said. These excerpts represent short stories which can be woven together into a meta-narrative about Señor
Hernandez’s current knee pain and the course of treatment he preferred.
Excerpt 4 (12:04 minutes)
M=Mr. Mills, FNP L=Luisa, promotora P=Señor Hernandez, patient
M: Okay and then you’re having, your knee’s hurting huh? L: También la rodilla le sigue doliendo ¿verdad? And your knee’s been hurting, right? P: Sí: Yes. L: Yes. M: What’s been going on there? L: Y ahí ¿qué paso? Me dijo que se le hinchaba ¿verdad? And there, what happened? You told me it swelled up, right? P: Sí, se hinchó, me quedó como ruma, se hinchó el otro día. Yes, it got swollen, it was like, this was the other day. [ L: It got swollen. In one occasion it got swollen. M: Okay. L: And it was just pain there. And it passed to the other and it came back to this one. M: Okay. L: And that’s gone away [the pain in the other knee]. M: So it’s just this knee that’s hurting. L: Yes. M: Okay. For how long? L: ¿Cuánto tiempo tiene con eso? How long has it been with that?
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P: Ya tengo años ya, como unos dos, tres años. It’s been some years now, like two or three years. L: Two or three years.
After tackling Señor Hernandez’s chronic diseases (diabetes, hypertension, and
cholesterol), Mr. Mills asked about his knee pain, “Okay and then you’re having, your knee’s hurting huh?”to which Señor Hernandez responded “Si.” Instead of launching into a series of closed questions (how long does it hurt, when does it hurt) which constrains the patient’s response and decontextualizes his experience, Mr. Mills followed up with an open-ended question, “What’s been going on there?”
Open-ended questions are meant to invite the speaker to give an answer that is more than a few words. However, Luisa had prior knowledge about the knee, so when she translated Mr. Mills’ open-ended question, she turned it into a closed question and prompted the “correct” answer from the patient: “What happened? You told me it swelled up right?” Señor Hernandez answered, “Yes, it got swollen the other day.” Luisa interpreted this but also added information for Mr. Mills: “On one occasion it got swollen…and it was pain here. And it passed to the other and it came back to this one…and that’s gone away.”
Storytelling is a relational act that involves the audience in the process of creating meaning (Garro and Mattingly 2000). Señor Hernandez’s symptoms were co- created by Luisa, showing that illness narratives, as “lived” and unfolding interactions, cannot be separated from their narrators or the space in which they are told. Luisa’s involvement could be a form of patient advocacy, helping Señor Hernandez tell the
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“correct” story to Mr. Mills. Or it could be a way of speaking, providing an illustration of illness narratives that are created interactionally and contain multiple voices, both
Luisa’s and Señor Hernandez’s.
Luisa’s participation raises important questions about the role of medical interpreters. What is the role of the interpreter when she knows additional information about the patient? Why did she tell the clinician, in this case, in a way manner that made the clinician think she was quoting the patient verbatim, rather than stating, “He told me earlier that his knee was swollen.”? These issues, and the interpreter-clinician relationship, will be further discussed in Chapter six.
Once Mr. Mills examined Señor Hernandez’s knee and explained that he was suffering from arthritis, Mr. Mills began to talk about treatment options. Señor
Hernandez, who had a friend with a knee replacement, interrupted Mr. Mills to tell a story.
Excerpt 5 (17:47 minutes)
M=Mr. Mills, FNP L=Luisa, promotora P=Señor Hernandez, patient
M: So, so, how do we fix this? L: ¿Cómo arreglamos eso dice él? ¿verdad? He says how do we fix this, right? M: Right, there’s not a great way to fix this? Except, L: Dice que no hay ningún modo bueno para arreglarlo. He says there is no good way to fix it. M: Except surgery and L: Solamente hay cirugías ¿verdad? Only surgery, right? M: Putting in a new [ P: Sí hay-
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There is- Si hay porque allá en mi rancho se dio un hombre que pronto estaba chueco de los dos pies. There is because over there in my town there was a man that all of a sudden was stiff on both feet. L: He says there is a cure for that. P: Y aquí está trabajando ya con fuerza. And now he is working strong. [ L: In his town, he had a friend who had kind of the same and now he, I guess he couldn’t walk over there and now here is he working now already. M: A-huh, a-huh and so- [ P: Está listo y hasta corre. He’s all set, he even runs. L: Now that person can run, he doesn’t know what operation it is. P: Si, si. M: A-huh, so what they probably did is they probably did a knee replacement. L: Lo que pasa es que a lo mejor le hicieron le reemplazaron la rodilla. May be what happened is that they replaced his knee. P: Algo hubo pero no supe qué, el ya está listo. There was something, but I didn’t know, he’s set. L: He doesn’t know.
Señor Hernandez interrupted Mr. Mills twice in this excerpt (bolded), a very unusual communication strategy for minority patients to use with a Caucasian clinician because of the power differentials between patients and clinicians (West 1984). He interrupted the clinician to tell a story about his friend who had severe knee pain. While the type of treatment prescribed for his friend is unknown, Señor Hernandez indicated the knee is now “working strong.” Interestingly, Señor Hernandez described this friend’s recovery in terms of work. He could have said that his friend was pain free.
Instead he positioned the benefits of the surgery in terms of being able to go back to
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work. Later Mr. Mills returned to the relationship between the potentially disabling
knee pain and work and talked with Señor Hernandez about his job.
At the end of the excerpt, Mr. Mills moved the story into the medical realm and
explained that the patient’s friend probably had a knee replacement. Mr. Mills talked
about knee replacements and the components of the surgery [omitted from excerpt].
He also said that the typical process is to wait until the pain is extremely intense before
surgery is prescribed. Finally, Mr. Mills described a new anti-inflammatory drug that
Señor Hernandez could try.
In the next excerpt Señor Hernandez again took control of the conversation to
tell two treatment stories. He did not interrupt Mr. Mills, but rather spoke in Mr. Mills’
position, or turn, in the pattern (bolded).
Excerpt 6 (21:51 minutes)
M=Mr. Mills, FNP L=Luisa, promotora P=Señor Hernandez, patient
M: So we’ll see if we can, if the medicine is gonna do the trick. L: Y a ver si esa medicina le funciona bien. Let’s see if this medicine works well. M: And we’ll see over time, over probably- L: Y en el paso del tiempo- And with time M: Probably several years if it starts hurting with that medicine then that’s when we’ll- L: A ver que sigue pasando con eso. We’ll see if it you still have that pain. M: Do we need you to see a surgeon to get it fixed? [ L: Si le duele con esa medicina ya tiene que irse a un cirujano. If it still hurts with the medicine you will have to go to a surgeon.
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P: Tengo un primo mío en México y va y le inyectan este líquido. I have a cousin in Mexico and he goes and he gets a liquid injected. L: He had a cousin, in Mexico they inject him (.) with a kind of liquid. P: Y le ponen líquido y anda un tiempo bien pero se le acaba y otra vez anda ahí. And they put liquid and he’s fine for a while but when it’s over he’s again like. [ L: So they inject him M: mhmm L: And sometimes he’s well with that liquid and then he’s back with pain. M: We do, that is something that (.) how do I say this. It’s something that is done here in the US too. L: Dice que eso también es algo que lo hacen aquí. He says that they do that here too.
[Mr. Mills describes a Cortisone injection]
P: Sí. Una vez allá en Durango llevé a mi esposa al doctor y mi esposa x- Yes. Once in Durango I took my wife to the doctor and my wife [ L: They went one time into Durango, where he’s from. P: y le dije de mi no le digas nada te tiene que mejorar a ti y dijo dile a tu esposo que yo le pongo una inyección y se le va a mejorar el dolor y dije- And I told her don’t tell him anything about me, he has to cure you, and he said tell your husband that I will put him an injection and he will feel better about the pain and I said- L: The doctor told him he could get an injection into his leg and the pain would go away. M: A-huh, a-huh P: Pero yo le dije que vengo a curarla a ella no yo. But I told him that I came for her, not me. L: But he was taking his wife to the doctor [ P: dijo- Me dijo no te voy a cobrar por ponertela y no te va a doler, no yo no quiero que me pongan nada. I tell you- He said I won’t charge you for putting it, and I won’t hurt, but I don’t want anything to be injected. L: But he didn’t want to because the doctor wasn’t going to charge him to
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put the injection in but he didn’t want to, he just stayed with the pain. M: Gotcha. P: Dijo y si te sientes bien después vienes y yo te pongo una cada vez que te duela el pie. He said and if you feel better later, you come and I will put it in every time your leg hurts. L: So that doctor wanted him to try that injection and the next time he would just come and get it and he would pay for it. M: Oh gotcha. L: But he didn’t want to. M: I understand. P: Sí, pero mejor me voy a tomar las pastillas que me dieron Yes, but I better take the pills you gave me. L: So he’s gonna take the pills.
By offering information through stories and narratives, patients have the
opportunity to share their knowledge and feelings about the illness. However, it is
sometimes difficult for patients to feel comfortable sharing such information, much less
gain control of the conversation long enough to tell a story. Tuckett, et al. (1985) found that during most observed surgery consultations (n=405) in the UK, doctors made an effort to state their views on the medical topic and to provide a rationale for them.
However, doctors rarely initiated discussions of the social or psychological implications of the patient’s condition or asked patient to share their illness stories. When patients spontaneously volunteered personal information, doctors did not ask the patient to elaborate and, in fact, they often evaded or inhibited these expressions from the patient
by interrupting and changing the topic.
These last two excerpts of the case study demonstrate that Señor Hernandez
successfully told several illness narratives. Most of the narratives were about treatment
options for his knee pain. In excerpt five, Señor Hernandez gained control of the
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conversation by interrupting Mr. Mills twice. He told a story about a cousin in Mexico who had found relief from a liquid injection but the injection was a temporary solution.
Mr. Mills responded to this illness narrative and explained that the injection was most likely cortisone and then explained how it was used [this part omitted from excerpt]. In excerpt six, Señor Hernandez responded to Mr. Mills’ explanation by saying, “Yes.” He then kept control of the conversation to tell another illness narrative, this time one concerning going to the doctor with his wife.
Señor Hernandez initiated the story by describing himself as self-sacrificing, despite his pain. At the appointment with his wife, he did not want his wife to tell the doctor about his knee pain. He explained, “I told her [his wife] don’t tell him anything about me, he has to cure you.” The doctor offered to inject the knee at no cost but
Señor Hernandez did not want anything injected, regardless of the cost. Mr. Mills did not attempt to interrupt the story or regain control of the exchange; he provided several utterances to show he was listening, “a-huh,” “gotcha,” and “I understand.”
Señor Hernandez ended the lifeworld narrative by bringing the topic back to the medical realm by saying he would take the pills that were given to him for his knee pain.
The subjects of Señor Hernandez’s narratives included his friend, his cousin, his wife, and his own story. By telling other people’s stories in relation to his own, Señor
Hernandez demonstrated his wide authoritative knowledge about the subject and positioned himself as a patient who talked to friends and had seen other doctors for his medical problem. Clearly, Señor Hernandez told narratives about treatments such as
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Cortisone injections or surgery to indicate that he preferred not to undergo these treatments at this point because they were too invasive. Stories, because they display and define the self, are one way that patients can exert power over the medical encounter (Ainsworth-Vaughn 1998). Thus, stories can be told to persuade the audience one way or another, even to teach the audience. By telling Mr. Mills stories about treatment options, Señor Hernandez tried to convey his authoritative knowledge and treatment preferences in a deferential and respectful way, possibly instead of engaging in a direct treatment negotiation process.
Cultural Competence
One goal of studying medical communication at this free clinic was to observe communication strategies of participants in cross-cultural and linguistic encounters. As mentioned in chapter three, cultural competence models advocate for clinicians to understand the cultural attitudes, beliefs, and practices of their patients. While clinicians at the free clinic talked about the importance of cultural differences with one another and the nursing students, in the medical encounter, when they were one-on- one with the patients, they more often focused on poverty, low education levels, low health literacy, and work related issues.
Researchers have found that doctors are reluctant to discuss or even recognize circumstances in the patient’s lifeworld (Taussig 1980; Mishler 1984; Waitzkin 1991;
Ainsworth-Vaughn 1998). However, when clinicians do converse with their patients about social problems, they tend to reinforce dominant social ideologies in areas such as
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work and disability, sexuality and gender roles, the “rights” of healthcare, and other issues (Waitzkin 1991). Instead of avoiding macro-level issues, many clinicians at the free clinic talked regularly to patients about their lifeworld including poverty, education, class, and the U.S. health care system. For example, in this excerpt below, while discussing Señor Hernandez’s knee pain, Mr. Mills asked what he did for a living.
Excerpt 7 (27:37 minutes)
M=Mr. Mills, FNP L=Luisa, promotora P=Señor Hernandez, patient
M: What do you do for a living? L: ¿Qué hace para trabajar? What do you do for work? P: Yo trabajo en la construcción. I work in construction. L: Works construction. M: Oh okay. So you, what kind of construction? L: ¿Qué clase de construcción? What kind of construction? P: Soy eh, tiro cement. I’m the, I finish with cement. L: Finish. M: Finish cement, yeah. So you’re up and on your feet all the time= L: Está todo el día parado ¿verdad? You are on your feet all day, right? M: =walking, ladders. Uh-huh and working construction, my father worked construction all his life. [ L: La construcción es un trabajo pesado, su papá también trabajó en construcción. Construction is a tough job, his father also worked in construction. P: mhmm, mhmm. Oh. M: So, so I know that it’s hard work and it’s L: Es algo pesado. It’s hard work. M: Lots heavy lifting, moving and [ L: Mucho levantamiento y todo eso
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A lot of lifting and all P: Sí. Yes. M: I know that um, things like that affect what you do and how you make a living so. L: Se sabe que cosas así como esas pues afectan las cosas que hace, como el sobrevivir. He knows how these things can affect the things you do every day.
Throughout the encounter Mr. Mills did not seek out or begin a discourse about
cultural differences with Señor Hernandez; rather the life circumstances he discussed
were those surrounding the patient’s job. In excerpt five, Señor Hernandez told a story
about his friend in Mexico who had knee pain, underwent a procedure, and then was
“working strong.” This story may indicate that Señor Hernandez worried about his own
knee pain, but a worry that he did not directly want to talk about. The fact that Señor
Hernandez had osteoarthritis, was older than 65, and worked on his feet in a construction job was significant. Rather than ignore these difficult life circumstances and what they may have meant in relation to his role supporting his family (Waitzkin
1991), Mr. Mills shared with Señor Hernandez that his father was also a construction worker. Mr. Mills showed empathy by saying he knew how difficult it was to work a manual labor job with “lots of heavy lifting, moving…” and that knee pain could affect how someone makes a living. By these actions, Mr. Mills may have reduced the social distance between the two, rather than emphasizing their differences.
Obviously, all participants in this encounter, the nurse practitioner, patient, and promotora, felt comfortable sharing general information, medical information and lifeworld information. As discussed previously, the literature indicates that patients
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rarely have the opportunity to share personal information with clinicians, given the
power differentials amongst participants and communication strategies that diminish
the patient’s abilities to share stories (Mishler 1984; Ainsworth-Vaughn 1998).
When attending to this patient’s lifeworld, Mr. Mills used different techniques.
First, he used statements and questions to produce structural cohesion. Rather than using the classic strategy of clinician question - patient response - clinician
acknowledgement and assessment/next question, which often restricts patient
involvement (Mishler 1984), Mr. Mills’ responses often supported Señor Hernandez’s
statements and kept the topic of conversation open until they were both ready to move
on. In this manner, Mr. Mills clearly demonstrated that he heard and understood what was said and further, that Señor Hernandez should continue talking. For example, in excerpt six, Señor Hernandez held the floor to tell his story while Mr. Mills’ statements worked to support the story until it came to a conclusion.
P: Dijo y si te sientes bien después vienes y yo te pongo una cada vez que te duela el pie. He said and if you feel better later, you come and I will put it in every time your leg hurts. L: So that doctor wanted him to try that injection and the next time he would just come and get it and he would pay for it. M: Oh gotcha L: But he didn’t want to. M: I understand. P: Sí, pero mejor me voy a tomar las pastillas que me dieron Yes, but I better take the pills you gave me. L: So he’s gonna take the pills.
In the post-encounter interview, Señor Hernandez said that at other clinics it was difficult to communicate because they lack trained interpreters. He specifically
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mentioned that he liked coming to the People’s Clinic because the clinicians explained
things in a way that he could understand. The next section proceeds to the second case
study, a different kind of medical visit in which the patient’s lifeworld issues were not
attend to.
II. Patient-Centered Encounter/Lifeworld Ignored (encounter 4)
The second case study describes an encounter with a 36 year old woman, Señora
Lopez, born in a rural part of Mexico. As I entered the exam room with an interpreter before the encounter to ask consent to observe the medical encounter, I noted that she had a worn and tattered-looking spiral notebook on her lap. I asked Señora Lopez if she was writing down medical information and she said she was writing a letter to her husband who was in jail. Talking about her family, Señora Lopez told me her husband was caught a few months ago while crossing the border near Laredo, from Mexico into
Texas. She had seven children, three of whom were small. She started crying as she told me about her children, saying that her blood sugar that morning tested over 500 and that she was afraid of dying.25 She knew friends and family who died from diabetes.
She also said someone broke into her apartment three months ago, which added to her
worry. It was evident that Señora Lopez felt unsafe at home, was very worried about
her husband in jail, which increased her strain as a single parent, and her uncontrolled
diabetes exacerbated her already stressful situation.
25Fasting (not eating in last 8 hours) normal blood glucose levels are between 80-125; over 500 is considered an emergency and many people are hospitalized when their sugar level gets this high. National Diabetes Information Clearinghouse, www.niddk.nih.gov 155
After Señora Lopez and I talked about the research project, Mr. Mills, the family
nurse practitioner from the first case study entered the room with Luisa, the same
promotora and interpreter. This was the first time Señora Lopez and Mr. Mills had met.
Total time: 49:37 med encounter: 29:21 my interview: 20:16
Excerpt 1(beginning of encounter)
M=Mr. Mills, FNP L=Luisa, promotora P= Señora Lopez, patient
M: Me llamo Mr. Mills. So how are you doing today? My name is Mr. Mills. L: ¿Cómo esta oraste? How are you today? P: Me siento mal [short laugh]= I feel bad [= L: She’s feels bad P: =me duele mucho [unintelligible]. [unintelligible] hurts a lot. L: She has pain in her back and her head. M: Okay. [7 sec] Alright, so let’s see. The last time you came in L: La última vez que vino aquí The last time you came P: mhm M: WM:s a week ago L: Hace una semana A week ago P: [soft] una semana One week M: How have things been going since then? L: Que de una semana para acá cómo ha estado todo. That how has it been from a week until now. P: Me, me siento, hay días que me siento bien, hay días que me siento mal. I, I feel, there are days in which I feel fine, others I feel bad. [= L: Sometimes she feels good, sometimes she feels bad.
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M: Okay, alright. Have you, how have you been feeling with the medicine? L: ¿Y cómo se estado sintiendo con la medicina? And how have you been feeling with the medicine? P: Con es, es como te digo hay días que me siento bien y hay días que me siento mal. It’s, like I tell you, some days I feel fine, others I feel bad. L: Sometimes well, sometimes bad.
As with the first case study, this one also began with an introduction by Mr. Mills
in Spanish followed by an open-ended question, “So how are you doing today?” Señora
Lopez answered with a feeling, “Me siento mal” (I feel bad) and then redirected this
feeling to physical symptoms, that she had pain in her back and head. Mr. Mills
responded, “Okay,” and then paused for 7 seconds, possibly encouraging the patient to
continue to talk about her pain. When she did not, Mr. Mills spoke again and said the
last time she was in the clinic was a week ago. He then asked another open-ended
question, “So how have things been going since then?” Señora Lopez again said some days she feels good, some bad.
Mr. Mills briefly mentioned her medicine and then asked the third open-ended question, “How have you been feeling with the medicine?” Señora Lopez again simply repeated that some days are good and some bad. Possibly trying to understand more specific feelings and symptoms from the patient, Mr. Mills next explained how people feel when their blood sugar is low. This prompted Señora Lopez to say that she had been feeling that her sugar level was high, that she eats and eats and is always hungry with a pain in her stomach.
In the next few minutes Mr. Mills asked about her diabetes symptoms and
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discussed the lab results from the last visit. In addition to her blood sugar levels being
dangerously high, Señora Lopez had high cholesterol levels. Because of these two
issues, Mr. Mills recommended that Señora Lopez make an appointment with the out patient clinic of the county hospital, which had a greater ability than the People’s Clinic to help her with lab testing and insulin, if needed. Señora Lopez explained that she did not know how to access the hospital and Luisa asked her several questions to see if she qualified for the hospital “insurance” card for indigent people. If so, Señora Lopez could access services on a sliding scale fee. After determining that she did qualify because she lived within the city limits, it came to light that the patient was not working and was not in the country legally. Señora Lopez quickly changed topics to one of her concerns about going to the hospital.
Excerpt 2 (14:38 minutes)
M=Mr. Mills, FNP L=Luisa, promotora P= Señora Lopez, patient
L: Yeah. So este lo que puede hacer es ir a la clínica de [name]. ¿Conoce esa clínica de [hospital]?Es lo mismo. So what you can do is go to the [hospital] clinic. Do you know that [hospital] clinic? It’s the same. P: ¿La [clinica]? No la he mirado…¿será que está por el lado de H[street]? The [clinic]? I haven’t seen it… is it the one that is by H[street]? L: Sí, por la H[street]. Yes, by H[street]. Usually we just refer them to the [clinic] and from there they get their papers transferred to any other clinic. M: Oh, okay, gothcha. Um, P: ¿Pero esto es de que no me van a dejar internada verdad? But this doesn’t mean that I will have to spend the night right? L: No. No. P: No.
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No. L: No. She’s not going to be staying there over night. M: No, no, no. P: ¿No? L: They P: Me tengo…mi chamaca le da miedo quedarse con [unintelligible]. I have… mi little girl is afraid to stay with [unintelligible]. L: No, cierran a las seis esa clínica. No, they close that clinic at six. P: ¿Oh sí? Y tengo dos chiquillos. Really? And I have two small boys. L: Because she has small babies. M: No, I-I, you, with your sugar at 500, L: Con la azúcar a quinientos, With your sugar at five hundred, M: we get concerned, L: Lo que es preocupa What worries him M: but there’s not, (..) it can get so high that you would have to spend the night. [ L: Puede llegar más alto a modo que tiene que quedarse allí. It can go higher and then you might have to stay there. M: But where we are right now, it, it wouldn’t be a time to spend the night. [ L: Pero orita, esta en un nivel donde puede llegar a controlar. But now, they are at a level where you can control. P: Sí, mhm. Yes, mhm. M: What are we going to do in the meantime?
Señora Lopez interrupted Mr. Mills to voice concerns from the space of her everyday life (bolded); she asked if she would have to spend the night at the hospital.
She went on to say that she had small children and they did not like staying there alone.
Mr. Mills reassured her that she would not need to stay the night this time, although her sugar levels were extremely high. Mr. Mills did not take up discourse around Señora
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Lopez’s contextual fears about her diabetes, that very high sugar levels could
necessitate an overnight stay at the hospital. She also did not have the opportunity to
clearly explain that she had no childcare assistance, that her husband had been in jail for
some time, and that she felt the neighborhood was unsafe. Mr. Mills did not recognize her lifeworld and thus did not ask Señora Lopez if she had a husband, partner, or any other social support. His discourse with the patient stayed strictly within the medical format. After he reassured Señora Lopez that she would not have to spend the night he changed the topic and asked, “What are we going to do in the meantime?”
The consultation continued in the voice of medicine as Mr. Mills explained the treatment plan to Señora Lopez: that he would increase her diabetes medicine and add a medication for cholesterol. Almost 19 minutes into the encounter, he asked Señora
Lopez if she had any questions.
Excerpt 3 (18:48 minutes)
M=Mr. Mills, FNP L=Luisa, promotora P= Señora Lopez, patient
M: I think that’s kind of where we’re going to be for now. L: Dice que eso es donde van a llegar ahorita. He says that’s where you will be going for now. M: And then, calling, um we’re gonna get you on the phone to call over to [hospital], to- [= L: Y este también van a hablar con [hospital]. And um they will also talk to [hospital]. M: to see what, when they can see you, to make sure you qualify and everything. [ L: para ver cómo y ver si califica y todo.
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to see how and if you qualify and everything. P: Okay. M: Alright. [said in a concerned /caring tone:] Do you have any questions or anything? L: ¿Una pregunta? A question? P: Eh, no. Eh, no. L: She said no. M: I know it’s kind of scary too. L: Dice que sabe que está un poco, le puede dar miedo. He says he knows you are a bit, that it can be scary. M: But- [= P: Porque tengo, no le digo que dos chiquitas [short laugh] Because I have, I’ve told you I have two girls [ L: She has small kids, children P: y que no me quiero morir todavía. and I don’t want to die yet. L: and she doesn’t want to die yet. M: No, understand, understand. And you’re. We’re the same age so I understand, I understand. We’re close to the same age. L: Dice que…si entiende. He says that... he understands. M: The good news is that you’re here, you’re- [ L: La buena noticia es que está aquí usted. The good news is that you are here. M: You’re working hard, you know you’ve been [ L: Está trabajando duro You are working hard M: coming the last you know, you came in June, a week ago= [ L: Vino en junio, vino hace una semana You came in June, you came a week ago M: =You’re right back here again, you’re taking your medications.
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[= L: Ya está aquí usted, se está tomando la medicina. You are here now, you are taking your medicine.
Mr. Mills now seemed to open the floor for an emotional discussion about
Señora Lopez’s illnesses asked how Señora Lopez felt about her diabetes; he related that it was scary. For the second time, Señora Lopez voiced concern about her high blood glucose levels from her diabetes, the fact that she had small children, and that she was afraid of dying. However, Mr. Mills did not talk with Señora Lopez about these issues, or probe into the fears of her illness and what it meant in her life. Rather, he tried to make her feel better by talking about what she was doing medically right: coming to the clinic, keeping appointments, and taking medicine. His response, meant to be empathetic, seems disjointed in relation to the patient’s repeated voicing of lifeworld concerns.
Twenty minutes into the encounter Señora Lopez brought the conversation back to her lifeworld.
Excerpt 4 (20:18 minutes)
M=Mr. Mills, FNP L=Luisa, promotora P= Señora Lopez, patient
P: Iba a entrar a trabajar en la lavandería donde yo trabajaba antes pero no fui porque como I was going to start working at a laundry where I used to work, but I didn’t go because since L: She says that she stopped working at a laundry where she used to work before. P: Está bien caliente, caliente este xx por esta on la G[street] It’s really hot, hot um xx around G[street] L: It was too hot for her…..it’s on G[street] M: Mhmm, mhmm.
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P: Y no fue. And I didn’t go. L: And she can’t…ahora fue? You now went? P: No, está bien caliente. No, it’s too hot [ L: It’s too hot for her to work. M: mhmm-mhmm [ P: Y cual tengo azucar alta no puedo And since my sugar is high I can’t [= L: When her sugar is really high and she feels she can’t- M: Mhmm-mhmm P: Tengo, vivo en apartamento que tiene aire acondicionado pero [unintelligible] I have, I live in an apartment that has A/C, but [unintelligible] L: She says that she lives in apartments and there’s central AC but she still needs to have another fan. M: Mhmm-mhmm, absolutely. [to himself:] Where was I going with that. And then the other thing is, you know, what we’re going to be worried about is:
In the middle of Mr. Mills’ discussion of diabetes medication, Señora Lopez interjected and said that she previously had a job at a laundry mat but had to quit because it was too hot. She went on to say that when her sugar was high, she felt too hot to work. She may have wanted Mr. Mills to legitimate this claim that her diabetes made her unable to work. But by not commenting or engaging in this topic, Mr. Mills
subtly reinforced the idea that Señora Lopez’s diabetes should not be a medical excuse to quit work (Waitzkin 1991).
As excerpt four illustrates, patients present a variety of social and personal troubles in tandem with their medical discourse, many of which have roots in socio-
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political issues beyond the individual level. When such personal, economic, and social
concerns arise in the medical encounter, the language of medicine leaves few options
for action. Generally, clinicians respond with technical solutions and counsel patients
toward dominant status-quo behaviors; i.e., that healthy people work. “The language of medical science can convey ideologic content, especially when it converts social problems into technical ones…that is, by a lack of criticism directed against sources of distress in the social context, medical discourse ideologically reinforces the status quo”
(Waitzkin 1991: 47). Many times, clinicians are not prepared to discuss basic social change as a meaningful alternative.
Not only did Mr. Mills remain silent when his patient stated that she could not work because of her high sugar level, he changed the topic and brought the discourse back to the medical realm by saying that with the increase in diabetes medicine she needed to be aware that her sugar level could get too low. He explained that one of the symptoms of hypoglycemia, or low blood sugar, is tiredness. This prompted Señora
Lopez to interject that she was so tired on some days that she did not want to get out of
bed to feed her children.
Excerpt 5 (21:41 minutes)
M=Mr. Mills, FNP L=Luisa, promotora P= Señora Lopez, patient
M: Um, always (.) know that if you L: Dice que todo el tiempo sepa que He says that you should always know that M: Feel really, really tired [
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L: Si se siente muy cansada If you feel really tired M: You feel like you can’t even hardly get out of bed L: Y que no se pueda parar de la cama And you can’t get out of bed M: Um- [ P: Hay días que me pasa eso There are days I feel that [ L: There are some days like that M: mhmm, but- [ P: Hay dias que me pasa eso que no me dan ganas ni de salir de la cama a darle de comer[unintelligible]. There are days I feel like I don’t want to even get out of bed and feed the [unintelligible]. L: She, she feels that sometimes like that, that she doesn’t even want to feel like feeding her children. M: Mhmm-mhmm P: Y no me quiero parar de la cama porque me siento cansada And I don’t want to get out of bed because I feel tired [ L: She doesn’t want to get out of bed, she’s tired. M: Mhmm, the um, sometimes what that is is- [ L: Dice que lo que pasa a veces lo que es He says what’s happening is M: When your sugar is high [ L: Cuando tiene la azucar muy alta When your blood sugar is too high P: mhmm M: Your body [ L: Su cuerpo Your body M: is trying to adjust and so, [
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L: esta ajustantdo, verdad. is adjusting, right. M: That’s why you’re hungry all the time. [= L: Y por eso tiene usted mucha hambre todo el tiempo. And that’s why you are very hungry all the time.
Señora Lopez interrupted Mr. Mills two times and told him how terribly tired she felt (bolded). Mr. Mills again did not respond to Señora Lopez’s concerns that there were days she could not even get out of bed to feed her children. He returned to a medical explanation. Instead of probing for other possible signs of depression, or asking about her feelings and support systems that she might access, Mr. Mills switched the topic to the voice of medicine and explained that the reason she was tired was because her sugar levels were so high and that the sugar was not getting into the muscles where it needed to be. He unilaterally shut down the topic of her tiredness by saying that they would continue to work together at the clinic in the future, although the hospital was the best place for her to receive treatment currently. Mr. Mills asked Señora Lopez to return next week, and then asked if there was anything else he could get her. She responded, “no.”
Excerpt 6 (24:13 minutes)
M=Mr. Mills, FNP L=Luisa, promotora P= Señora Lopez, patient
M: Alright, can I get anything else for you? L: ¿Algo más para usted? Anything else for you? P: No. L: She says no.
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M: Alright. Hang in there, everything’s going to be good. I promise. L: Dice que aguante y que todo va a estar bien. He says hang in there and that everything will be fine. P: [short laugh] Okay. M: I can tell she’s (..) scared. L: Que sabe que tiene miedo. He knows you are scared. P: [short laugh] [22 sec while A listens to heart and lungs] M: Good, let me check. [8 sec] Alright, alright let me go and get some medicine and I’ll be right back. L: Va por la medicina y ya viene para acá. He will go for the medicine and he’ll come back. P: Okay.
At the very end, in this last excerpt, Mr. Mills actively brought up Señora Lopez’s
feelings. After asking a highly open-ended question (“Can I get anything else for you?”),
he said, “Hang in there, everything’s going to be good. I promise.” After Señora Lopez
laughed nervously, Mr. Mills again tried to connect with his patient’s feelings by saying,
“I can tell she’s scared.” And again Señora Lopez laughed. It could be that at this point,
Señora Lopez had given up on discussing her worries and concerns with Mr. Mills and simply retreated into the voice of medicine.
In summary, excerpts from this case study show instances in which the clinician spoke in the voice of medicine against the patient’s lifeworld concerns. Mr. Mills’ strategies produced a scattered affect from the point of view of the patient’s lifeworld.
Many times his statements or questions lacked cohesiveness and did not refer back to
Señora Lopez’s prior response. Instead, he introduced medical information into the conversation to which the patient was expected to reply (Mishler 1984). This pattern
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occurred five times throughout the entirety of the encounter. The patient’s story, told in fragmented pieces throughout the encounter, can be summarized as follows:
My sugar level is very high, in fact so high that I am afraid of dying and leaving my small children alone. I am also the sole family caretaker and am afraid of seeking additional treatment for my diabetes at the county hospital because I don’t want to be admitted overnight. If I stay overnight, there will be no one to look after my children. While I am the sole caretaker, I can’t keep the job I had because my sugar level is so high that it makes me very hot and the job at the laundry was so hot it was unbearable. All of this leaves me very tired, so tired that sometimes I do not want to get out of bed, even to feed my children.
Barry, et al. (2001) described patients such as Señora Lopez as notable in their repetition of their lifeworld in the face of the structure of the medical encounter. Most patients who repeatedly brought up personal situations did so because they had strong feelings about their situations, often situations that included chronic diseases like diabetes. In their study, Barry, et al. (2001) described this kind of encounter as
“lifeworld ignored.” As patients spoke in the voice of their lifeworld, clinicians ignored their comments and communicated in the voice of medicine. Patients in this category often left the office visit feeling unheard; patients in this category also had the poorest medical outcomes of any group in their study.
IV. Discussion
Patient-Centered Style
Overall, Mr. Mills’ style of treating patients fell squarely within a “patient- centered” style rather than a “disease-centered” one. Patient-centered care incorporates a bio-psycho-social perspective of illness and recognizes the “patient-as- 168
person.”Clinicians with this style believe that “knowing what kind of person has a
disease is as essential as knowing what kind of a disease a person has” (Platt, et al.
2001). These clinicians are more likely to use language as a diagnostic tool in
conjunction with physical exams and tests. Additionally this style focuses on creating a
partnership between the clinician and patient both by considering the patient’s point of
view and negotiating aspects of the treatment. Unfortunately, while medical students
as well as seasoned clinicians want to focus on the patient, studies by Platt, et al.(2001) indicate they often lack the tools to do so.
Patient-centered care is often operationalized in the literature as the degree to which clinicians ask detailed and open-ended questions, elicit patient questions, educate patients, test for patient understanding, elicit the patient’s explanatory model(s) of his or her illness, build partnerships by asking for patient’s opinions and expectations, and negotiate treatment plans (Rivadeneyra, et al. 2000; Roter and Hall
2004). Patient-centered styles are particularly advocated in situations in which the patient has a chronic illness and in situations in which ethnocultural beliefs about illness
may play an influential role (Harwood 1981; Kleinman 1988).
Over-laying these patient-centered strategies with the 19 encounters I observed
between Mr. Mills, his patients, and the interpreters resulted in the following
observations: Mr. Mills was mindful of the positioning of his body as he tried to sit at
eye level or below the patient; he maintained very good eye contact with patients and
did not always focus on the interpreter; he provided backchannel cues of listening (e.g.,
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“mhmm” or “yeah”) and nodded his head; he introduced himself to the patient at the
beginning of the encounter and sometimes introduced the interpreter; he asked open-
ended questions about the illness and the patient; he sometimes talked about his
personal life to make connections with the patient; he used humor; he did not use a
large amount of jargon when discussing complicated medical terms such as the analysis
of a blood test; and he frequently drew diagrams to educate patients. During my
interview with Mr. Mills he explained his communication strategies:
“I try to make a personal connection because I feel, to establish a partnership that I’m not the expert. We’re in this together. I try to make it informal. I try to jot something fun or what they are into down into the chart so that next time I will hopefully find it and read it and remember that connection, that person. I purposely try to limit them getting up on the exam table or me being above them looming over. I want to keep an even eye level, keep them comfortable.”
Unfolding the Lifeworld
Because the first case study was in essence a first-encounter visit between Señor
Hernandez and Mr. Mills, the encounter included many of the history-taking questions in which the patient’s participation was limited. Nevertheless, Mr. Mills’ repeated invitations for the patient to be an active participant allowed Señor Hernandez to discuss his lifeworld and opinions about treatment. In fact, Mr. Mills asked 13 open- ended questions and Señor Hernandez volunteered personal information eight separate times. Mr. Mills did not interrupt Señor Hernandez during the encounter; however,
Señor Hernandez interrupted Mr. Mills twice (excerpt 5) to tell his treatment narratives.
This is a very unusual pattern for patients to use as clinicians are consistently found to
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interrupt patients at a rate of four-to-one (West 1984).
In the second encounter, Mr. Mills asked a total of six open-ended questions, about half the number as in the first case example. Interestingly, Señora Lopez volunteered information about her lifeworld several times, but she did not do so in response to one of Mr. Mills’ open-ended questions. She interjected lifeworld information during a different topic of conversation or at the end of a topic. As with the first encounter, Mr. Mills did not interrupt Señora Lopez during the encounter but he used two distinct patterns to diminish her lifeworld comments: 1) he engaged with the patient’s topic but changed the topic out of the lifeworld into the medical realm, or 2) he took control of the floor and abruptly changed the topic. For example, in excerpt four when Señora Lopez spoke about not having a job because of her diabetes symptoms,
Mr. Mills’ next utterance was not a comment about joblessness. Instead, he provided listening cues (mhmm, absolutely) and then changed the topic of conversation.
M: Mhmm-mhmm, absolutely. [to himself:] Where was I going with that. And then the other thing is, you know, what we’re going to be worried about is:
When the patient’s lifeworld is repeatedly blocked by clinicians, the patient can be de-contextualized from his or her illness. However, Señora Lopez’s dangerously high diabetes levels, over 500, may have been such a concern to Mr. Mills that he was not focused on her personal and emotional narratives. The American Diabetes Association identifies hypoglycemia as a prolonged glucose level greater than 130 (fasting) or 180
(non-fasting). Chronic hyperglycemia at levels more than slightly above normal can
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produce a very wide variety of serious complications over a period of years, including
kidney damage, neurological damage, cardiovascular damage, damage to the retina, and
so forth. Glucose levels as high as 600 may trigger a diabetic coma.26 It is possible, then, that Mr. Mills unconsciously focused on this high risk danger as the more pressing and immediate problem in the patient’s case.
As a clinician who frequently verbalized his intense feelings about social justice and “health care for all,” Mr. Mills knew that the People’s Clinic was the only medical organization that could provide healthcare to this population. He also understood that most patients who were referred to the county hospital (observed during my research), such as Señora Lopez, did not follow up and make appointments. The financial cost of receiving treatment and numerous bureaucratic barriers at the hospital were too difficult for most immigrants to manage. Mr. Mills, perhaps, wanted to focus on Señora
Lopez’s critical medical concerns to emphasize that she really must get help outside the free clinic. Seen in this way, Mr. Mills’ typical meaning-centered role diminished as he adhered to biomedical authoritative knowledge about the risks of diabetes.
These two case studies, focusing on Señor Hernandez and Señora Lopez, illustrate that having a patient-centered clinical communication style does not necessarily mean that clinicians are always open and responsive to the patient’s personal and emotional issues. Rather, clinicians are challenged to make a concerted effort to notice and be attentive when the patient overcomes discourse obstacles and
26 WebMDhttp://diabetes.webmd.com/hyperglycemic-hyperosmolar-nonketonic-syndrome accessed 3/10 172
presents information from their lifeworld. Obstacles which make it difficult for patients
to bring up personal and emotional information include the normative format of the medical encounter which gives clinicians more power over discourse, sociolinguistic roles such as the authoritative role of clinicians in comparison to patients, and clinician strategies: to speak and remain in the voice of medicine, such as interruptions, controlling the topic of discourse, and asking closed questions (those that elicit a yes or no response).
While individual communication styles were very different in these two cases,
each case example was comprised of the same clinician and interpreter. Both case
studies were representative of encounters in the “mutual lifeworld” and “lifeworld
ignored” categories. Deeper analysis of each encounter, however, illustrates that
communication behaviors are situation specific and constructed in the interaction rather than a fixed quality by each individual. Medical communication studies emphasize that patients and clinicians are not all alike. Each brings different expectations and desires to the medical visit, including how they communicate their expectations and desires. Thus, all patients do not want to talk with their clinician about how their illness influences their personal lives; nor do clinicians, even those who purport patient-centeredness, what to hear and respond to lifeworld experiences.
Suggestions for Incorporating the Lifeworld
Taking a broader look, numerous clinical studies show that medical outcomes are improved when patients are treated as interactive partners during medical
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encounters (Roter and Hall 1992; Koehn 2004). However, while medical anthropologists
and other social scientists have emphasized the importance of the patient’s lifeworld in
medical encounters, few studies have assessed specifically the benefits of
acknowledging lifeworld experiences or the consequences of ignoring them. Barry, et
al. (2001) stands out as the experts in this minority group. She and other authors asked
“whether ignoring the lifeworld leads to medicine which is less effective and which fails to be attentive and responsive to the patient’s needs as a unique human being” (491).
Their study found that patients who attempted to discuss their lifeworlds, but had clinicians block or ignore these attempts, had the worst medical outcomes of any group.
The challenge faced by clinicians and patients alike is that they must establish a
space of shared meanings, to the patient and clinician, in order to communicate and
understand one another. At the People’s Clinic, clinicians faced a double burden; not
only did words need to be translated into Spanish or English, but languages and beliefs
from patients’ lifeworlds had to be analyzed in relation to biomedical understanding and
treatment. As Mishler, author of the seminal work on lifeworld narratives, noted, “The
special asymmetry of the medical interview is that the physicians are communicatively
competent in both codes. They can speak in either the voice of the lifeworld or of
medicine, but patients are competent in only one” (1984: 172). Thus, the burden falls
on the clinician to translate the patient’s experiential statements into medicine and
medicine into lifeworld experiences.
Recognizing and engaging the patients’ lifeworld, perhaps by conducting a “mini-
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ethnography,” has the possibility to greatly reduce mistakes due to misunderstanding
and misinformation. It can reveal unmet patient needs and minimize unrealistic
expectations, and it can provide a vehicle for the patient’s voice to be heard (Roter and
Hall 1992; AMA 1999; Barry, et al. 2001; Koehn 2004; Kleinman and Benson 2006).
Kleinman provides a clear methodology for this in his writings on the explanatory model.
In reality, at a free clinic such as the one studied, conducting a mini-ethnography may be
highly challenging. In most cases, the clinician is forced to make rapid assessments
about the patient’s lifeworld while simultaneously treating the physical or medical condition. Developing an understanding of one another’s expectations of the medical process and life-shaping experiences can be time-consuming; however, this information can be gathered over the course of several medical encounters, thus enhancing the final outcome of the medical problem.
This chapter presented ethnographic case study data about how medical and personal information is shared within a cross-cultural and linguistic medical encounter.
A careful analysis of communication strategies showed that patients and clinicians can create a space for patient’s authoritative knowledge and lifeworld information, which
can be incorporated into the medical treatment. On the other hand, lifeworld
information can be blocked by clinicians, which may lead to the patient feeling unheard
and dissatisfied.
Chapter five discusses the content of lifeworld narratives across the 30 medical
encounters at the People’s Clinic. In these encounters, primarily with Mexican
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immigrants, the analysis shows that differences in cultural health beliefs were not found to be included in patient’s primary lifeworld narratives as frequently as conversations about poverty and joblessness.
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Chapter Five: The Lifeworld and Explanatory Models
The case studies from the previous chapter provided a detailed view of
communication strategies and the ways information is invited and passed from one
participant to another. This chapter shifts emphasis to examine the content of patient
information across 30 medical encounters. When patients discuss their lifeworld, what
do their narratives contain? What is the clinician response? Because of the explicit
research focus on cross-cultural and linguistic medical encounters, it is fruitful to
examine the kinds of messages and information that are discussed by the participants,
whether cultural differences may affect health care decision making and treatment, and
how participants make sense of issues that are communicated during the encounter.
A common theme expressed throughout the medical anthropology literature is
the notion that patients and clinicians have different perspectives about diseases,
illnesses, and the illness experience (Kleinman 1980). A medical encounter often
represents a plurality of voices and systems of knowledge; the “voice of biomedicine,”
the “voice of the lifeworld,” and voices from other ethnomedical systems (Mishler 1984,
Gaines 1992a; Kingfisher and Millard 1998). In this chapter, the fluidity of these voices, as dynamic conceptual systems, are present in the way participants communicate and act during the medical encounters.
Unfortunately though the concepts are well articulated, relatively little linguistic data exists from cross-cultural medical encounters about the nature or consequences of
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possible discordance in these voices.27 Do patients share cultural or ethnomedical
issues with the clinician? If so, how does this information shape the medical encounter?
The concluding section of this chapter discusses participant communication strategies
that may more fully incorporate mutual agreement and acceptance in a medical
encounter.
I. Lifeworld Narratives in the Medical Encounter
This section examines lifeworld narratives in the medical encounter. Lifeworld
narratives are simply stories that patients tell about their life experiences, including
illness experiences and problems. The lifeworld often contrasts with the “voice of
biomedicine,” which is described as technical, scientific, and decontextualized (Mishler
1984).
Patient narratives were analyzed by listening to the encounter recording in
tandem with reviewing the encounter transcript to see if lifeworld narratives were
present in the encounter and the content of those narratives. Explanatory models are
ideas and preferences about the diagnosis, etiology, and treatment that people believe
about a specific illness or disease. Because models are partly rooted in symbolic and
tacit health belief systems, models are not static and can lack coherence (Kleinman
27 In fact, of the 26 research articles about cultural competence written by medical professionals discussed in Chapter 3, only four contained real examples of medical communication in a cross-cultural encounter (Hansen, et al. 2000; Eunice 2004; Fitzgerald, et al. 2005; Rosenberg, et al. 2005). Anthropologists writing about cultural competence nearly always include examples from their research data (e.g., Chrisman and Maretzki 1982; Lazarus 1988; Santiago-Irizzary 1996; Hunt 2005; Shaw 2005; Kleinman and Benson 2006).
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1980). Specific attention was paid to whether explanatory models were discussed, and
if so, which primary model they were most closely aligned, biomedical or cultural. Of
the 30 observed and recorded medical encounters, nine encounters stayed entirely in
the voice of biomedicine; fifteen patients brought up explanatory models, disease
etiologies, or issues from their lifeworld. And in six encounters, the clinician tried to engage the patient in casual conversation.
Table 5.1 presents this information along with the patient’s biomedical diagnosis. The last column, “post-interview with researcher,” shows the patient’s etiological beliefs and whether he or she utilized treatments other than the medication provided by the People’s Clinic. In some instances the patient did not discuss their explanatory model during the interview; this is designated by “--” in the cell. Nine patients completed a survey instead of an interview; the survey medium was not reliable in eliciting an explanatory model.
Table 5.1: Lifeworld talk in relation to present complaint/biomedical diagnosis
Present Encounte Post-Interview Complaint/Biomed Encounter r # w/ researcher Diagnosis No Lifeworld (n=9) 7 ACUTE: Ear infection No lifeworld Survey
9 CHRONIC: Type II No lifeworld Survey Diabetes 10 CHRONIC: Allergies No lifeworld Survey
Mixed etiology: “tensions” and the 12 CHRONIC: pancreas not working well No lifeworld Type II Diabetes Was taking cactus for diabetes CHRONIC: Type II Cultural etiology: drinking certain 19 Diabetes, leg cramps, No lifeworld liquids, such as grape juice, on the
shoulder pain full moon
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24 CHRONIC: Allergies No lifeworld Biomed etiology: dust
25 ACUTE: Stomach Biomed etiology: overeating, No lifeworld pain/gall bladder “bad” foods 26 ACUTE: Stomach pain No lifeworld Survey
Mixed etiology: a sudden event that caused the sugar/pancreas to CHRONIC: Type II 28 be high Diabetes, toe/foot No lifeworld
infection Spoke a lot about fears of infection Clinician Initiated Lifeworld (n=6) 6 CHRONIC: Hypertension, Clinician initiated lifeworld -- High cholesterol 8 CHRONIC: Hypertension Clinician initiated lifeworld Survey
11 ACUTE: Clinician initiated lifeworld Survey Ear infection 16 ACUTE: Infection Clinician initiated lifeworld Survey
17 CHRONIC: Type II Clinician initiated lifeworld Survey Diabetes CHRONIC: 18 Cultural etiology: a Hypertension, Clinician initiated lifeworld traumatic/emotional event Depression Lifeworld and Explanatory Model Discussions (n=15) CHRONIC: 1 Biomed etiology: eating “bad,” Hypertension, Type II Lifeworld talk engaged: general being fat, smoking Diabetes CHRONIC: 2 Lifeworld talk engaged: worries about Hyperthyroidism, -- possibility of cancer Depression 3 Lifeworld talk engaged: high expense of CHRONIC: Hypertension -- medicines CHRONIC: Type II Lifeworld talk ignored (case study #2 in 4 Diabetes, High Biomed etiology: genetic, ch 4): how diabetes impacts life, weak cholesterol, overeating/eating “bad” support network, joblessness Hypertension Mixed etiology 5 CHRONIC: Type II Lifeworld talk ignored: high expense of Diabetes diabetes testing materials, joblessness Takes herbs and cactus for diabetes Mixed etiology: not following a 13 CHRONIC: Lifeworld talk engaged: life stresses, clear schedule or order to life, not Hyperthyroidism joblessness, impact of disease on life eating 14 ACUTE: Pt provides biomedical EM of rash Survey Rash 15 Lifeworld talk engaged: life stresses, Mixed etiology: animals, dust, CHRONIC: Asthma money plants and hot/cold imbalance 20 ACUTE: La Gripa vs. Cultural etiology: hot/cold Cultural lifeworld in encounter – EM Allergies imbalance 21 CHRONIC: Infection vs. Cultural lifeworld in encounter – HIV Cultural etiology: hot/cold HIV EM: cold infection, bone/bone imbalance 180
pain, then major distrust in biomedicine
Biomedical etiology: poor diet, Lifeworld talk engaged: financial, job, 22 CHRONIC: Type II alcohol, being alone life issues, how diabetes affects his life, Diabetes his diet, his libido Was taking cactus for diabetes 23 Lifeworld talk ignored: past personal CHRONIC: Hypertension -- issues, illiterate, fear of doctors 27 CHRONIC: Depression/ Lifeworld talk engaged: how depression Biomed etiology: worries, anxiety impacts life problems 29 ACUTE: Rash Pt provides biomedical EM about rash Biomedical etiology: unclean razor
Lifeworld talk engaged: life issues, 30 CHRONIC: Type II Biomed etiology: too much sugar treatment preferences (case study #1 in Diabetes in pancreas ch 4)
Voice of Biomedicine
Nine medical encounters followed the structure outlined by Mishler (1984) of an
“unremarkable interview.” That is, these encounters took place entirely in the voice of biomedicine and neither patient nor clinician ventured into the lifeworld. Most of these encounters adhered to the typical pattern of the unremarkable interview, a sequential set of three turns: the clinician asked a question, the patient responded, and the clinician acknowledged/assessed the response and asked the next question. This format allows the clinician to retain control of the topic of conversation. Patients in these encounters communicated in ways congruent with this format. For example,
S=student nurse P/I=promotora/interpreter P=patient
S: Do you ever have any headaches or anything like that? P/I: ¿No tiene dolores de cabeza? Do you have headaches? P: mhmm [yes] S: Yeah? How often do you have headaches? When you feel nauseous? P/I: ¿Qué tan seguido tiene? How often do you have them? P: Pues ahorita ya los traigo ya. Well I bring them in right now. P/I: He has it right now. 181
S: You have a headache right now? P/I: Yes. S: Do you feel nauseous right now? P/I: ¿Siente nausea ahorita? Do you feel nausea right now? [2 sec] S: Is there anything that makes this feel better? Is this during the day as well? P/I: The nausea? S: Yeah. P/I: También en el día le da las nauseas o nada más en la noche? Do you also get nausea during the day or only at night? [ S: Or is just at night? P: También en el día. Also during the day. P/I: During the day also. S: During the day too? Can I look in your nose?
As with this example (encounter 26) and the other “unremarkable” encounters,
the clinician controlled the topic of conversation and freely changed topics when she
saw fit, even if the next topic lacked subject cohesion. In the example above, the
clinician asked numerous closed ended questions and then jumped from asking about
the patient’s nausea to asking if she could look up his nose in one turn. The nine
patients in this category did not attempt to bring up their lifeworld and also stayed in the voice of biomedicine.
Barry, et al. (2001) also studied the presence or absence of lifeworld talk and
found that almost one-third of patients and clinicians in their sample of 35 participated
in encounters that stayed strictly in the medical realm (i.e., no mention of the lifeworld).
These visits tended to be patients with acute problems and the patients or clinicians
perhaps wanted the medical visit to be as quick and efficient as possible. Interestingly,
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patients who had this type of encounter gave the doctor the highest satisfaction rating
(Barry, et al. 2001).
Congruent with these findings, all but one of the patients at the People’s Clinic who participated in this type of encounter expressed satisfaction during the interview or survey with the medical encounter.28 Most (6 of 9) were at the clinic for a chronic problem, for example, type II diabetes or allergies.
Lifeworld Discussion Initiated by the Clinician
An interesting pattern emerged when examining lifeworld narratives and how they were introduced within the encounter discourse. Fifteen patients brought up lifeworld issues in dialogue with the clinician. However, in six other encounters in which the clinician tried to engage the patient in a lifeworld conversation, the patient did not reciprocate or gave minimal responses. This pattern of clinician initiated lifeworld discussion is not addressed in the medical communication literature as clinicians are often portrayed as people who use strategies such as interruptions and closed- questions to disengage from the patient’s lifeworld narratives (Mishler 1984; Waitzkin
1991;Ainsworth-Vaughn 1998; Fisher 1998).
Two male family nurse practitioners, Mr. Mills and Mr. Kendall, often asked
about the patients’ home lives, their families, and their jobs, as evidenced in the next
two examples. It frequently seemed they initiated these discussions to establish rapport
28 One patient expressed dissatisfaction for having to wait 2 hours to see the family nurse practitioner. 183
and to get a sense of their patients’ lives in general. Encounter eight shows that patients often answered the questions, but gave minimal answers.
M=Mr. Mills, FNP P/I=promotora/interpreter P=patient
M: Um, are you working? P/I: Esta trabajando? Are you working? P: Yeah, yeah M: What do you do? P/I: Que lo que usted hace? What do you do? P: Delivery, pizzeria. M: Ah, very good. Have you been doing that a long time? P/I: Esta haciendo lo mismo mucho tiempo? Have you been doing the same thing for a long time? P: Ah, como dos anos. Ah, about two years. P/I: Two years. M: Okay, good, good. And you have family around? P: mhmm M: Who do you live with? P/I: Con quien vive usted? Who do you live with? P: Ah, con mis fam- [ahm, clears throat], mi esposa y dos hijos. Ah, with my fam-, my wife and two kids. P/I: His wife and two sons. M: Okay, how old? P: Eleven y cuatro. Eleven and four. M: Four and eleven. It’s a big house. They’re out of school for the summer? P: Yes. M: Good, so you’re spending some time? P/I: Esta pasando mucho tiempo con ellos? Are you spending a lot of time with them? P: Si, si. M: Good, good.
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For Mr. Mills, his lack of direct connection with patients because of the language
barrier led him to instigate informal conversations. He spoke about this connection
during his interview.
“I miss the connection. Because I have to go through the promotoras, I do that informal chit-chat and personal connection. On a practical side, like that patient today, is he at a job that is physically demanding? Part of our job is to help him keep working as long as he wants to because he is probably the only support for his family” [interview with Mr. Mills, FNP].
In a second example of clinician initiated lifeworld conversations, Mr. Kendall
(FNP) saw a young female patient for an ear infection (encounter 11).29 The girl’s
mother was also in the exam room; however, she did not speak English and the patient
acted as an interpreter for her mother. After Mr. Kendall examined and discussed
treatment for the ear infection, the patient’s mother prompted her daughter to inquire
about her wrist that had been hurting. Mr. Kendall asked what the mother did for a
living and she answered that she made tortillas at a local restaurant. Mr. Kendall asked
whether she could go to the local county hospital but the mother was undocumented,
was not a county resident, and thus did not qualify. He suggested several treatment
options and recommended that the mom speak with the clinic social worker to
determine if the mother could visit other clinics that had more advanced equipment
than the People’s Clinic. At the end of the encounter, Mr. Kendall talked to the young
patient about the importance of education and how education is linked to a better life,
including a life that is healthy.
29 Informed consent was received from both the 17 year old patient and her mother. 185
K=Mr. Kendall, FNP P=patient
K: Now listen. The reason everybody wants you to stay in school? And do well in school? Is so you won’t end up making tortillas for a living. P: [short laugh] ah-huh K: Okay? Your mom doesn’t want you to do that.= P: A-huh K: =She wants you to go to college. She wants you to go to college, and buy a house, and get insurance and so you don’t, you know. (.) So you’ll have an easier life. [whispers] Okay?= P: =Yeah= K: =Really important. P: Yeah K: And all it takes is getting pregnant and then, you know, you’re going down a different road. [ P: Yeah [short laugh] K: And so if you can avoid that, you’ll have an easier life. Okay, see ya, bye. P: Bye
After Mr. Kendall left, the patient’s mother asked two times, “Que dice?” or
“What did he say?” The young patient did not translate the advice Mr. Kendall gave.
We might hypothesize that she was embarrassed at Mr. Kendall’s statements or felt he had over stepped a boundary with his comments. Indeed, from this passage, Mr.
Kendall’s words may seem condescending and paternalistic. In context, however, he routinely talked to young people about studying hard, he spoke to parents at the local elementary school about helping their children succeed in school, and he mentored one local Mexican immigrant girl who volunteered at the clinic to help her graduate from high school and get into community college.
Clinicians have numerous reasons to engage patients outside of the voice of medicine: to establish rapport, to better understand the lives of their patients, and to
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help them become successful individuals. Not all patients in this sample appeared to want to talk with the clinician about their personal lives and perhaps felt as if he was intruding in their personal space. For many encounters, it was the first time the patient and clinician had met, and it is possible that the patients did not believe the clinician was authentically interested. A third hypothesis may be that a patient-centered style of care, a view that the patient is a partner in his or her treatment, may not be the desired approach by all patients. This is certainly an area for further research.
Lifeworld Discussions
Fifteen patients talked about their lifeworld or explanatory model with the clinician; of these, six patients brought up lifeworld issues that included finances or joblessness (encounters 3, 4, 5, 13, 15, 22). That is to say, the predominant themes in their narratives were centered on their current financial or work situation and how those circumstances affected their lives, families, and illnesses. For example, in the following encounter (encounter 3) Mr. Mills (FNP) saw a patient from Columbia who had hypertension. Mr. Mills told the patient he wanted to increase the dosage of the blood pressure medicine. The patient then spoke to the promotora and she interpreted to Mr.
Mills:
M=Mr. Mills, FNP P/I=promotora/interpreter
P/I: He just wanted to let you know that a couple years ago he was taking some kind of medicine from, he is from Columbia? And this medicine, it was very expensive and he couldn’t afford it. M: Okay. Mhmm, and so if you can’t afford it, what good is it, right? And, we could find the best medicines, but if they are too expensive for people to
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buy, then people aren’t going to buy them, so why, so we’re going to try to find medicine that works for you.
Despite the fact that patients received medicine at the clinic pharmacy for free, Mr.
Mills discussed the high cost of pharmaceuticals in today’s health care climate and reassured the patient that he would receive medicine that worked and was affordable.
In two other encounters, the clinician made no response to their patients’
lifeworld issues concerning finances and joblessness. For example, one female doctor
from a nearby hospital, Dr. Henry, who was not a regular volunteer at the clinic, repeatedly mentioned throughout the encounter that the patient, Señora Vazquez, should check her blood sugar at home. While this was not an abnormal request, most of the patients at the People’s Clinic could not afford the necessary diabetes testing materials, such as a glucometer and test strips. In this case (encounter 5), Señora
Vazquez told Dr. Henry that she and her husband lost their jobs recently and could not afford to purchase a glucometer to monitor her blood sugar at home.
Dr=Dr. Henry P/I=promotora/interpreter P=patient
Dr H: Mh. Does she, ah, does she check her blood sugar at home? P/I: Se checkar su azucar en casa? Do you check your sugar at home? P: No, ya no tengo una machina. No, I don’t have a machine. P/I: No, she doesn’t have a machine. [86 seconds later] Dr H: And she can’t get a machine to check her (..) blood sugar? P/I: Her husband recently lost his job and she is not working right now either. Dr H: Well, it sounds like her blood sugar is getting low. [100 seconds later] Dr H: Okay, ideally she could check it every day for…[not translated] [83 seconds later]
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Dr H: M-kay. That’s why it’d be nice if we could get her to check her blood sugar…[not translated]
Alternatively, the following example shows how Mr. Mills (FNP) responded to his
patient’s inability to afford diabetes test strips. The patient, Señor Garcia (encounter
22), was a second generation Mexican immigrant and this was his third visit to the clinic.
M=Mr. Mills, FNP P=patient
M: Good, good. Are you checking your sugar at home? I know in the past you’ve had kind of a little bit of a chance to check your sugar at home. P: I didn’t have a meter and ah, and the one that I had I never did use again because I ran out of strips and- [ M: Okay, yeah. Yeah, the strips are the expensive part. You can always come here to get your sugar checked.
Later in the same visit, Sr. Garcia said that he lost his reading glasses and could not replace them because of the cost. Mr. Mills recommended he see an eye doctor and gave him information about a low cost doctor in the community, while also verbally recognizing that the patient might not be able to afford it.
M=Mr. Mills, FNP P=patient
M: It’s a hundred dollars for the exam and glasses. So for everything and um. P: Okay. M: With diabetes we want to make sure those blood vessels in your eye look okay and so, you know. I’m not saying you need to do it, I know a hundred bucks, I would have to go and look in my wallet to see if I could spend that hundred right now. But you know, it can help, you might give ‘em a call anyway.
The differences between the responses from Dr. Henry and Mr. Mills are apparent. Despite the fact that Sra. Vazquez lost her job and could not afford diabetes
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testing materials, Dr. Henry seemingly did not consider her responses and repeatedly
mentioned that she should check her sugar every day. Interestingly, the last two times
the clinician repeated this, the promotora did not translate the doctor’s comments to the patient, perhaps because she felt the doctor was not listening to the patient’s circumstances.
Mr. Mills, on the other hand, asked about his patient’s job at the beginning of the encounter and later, when Sr. Garcia said he could not afford the diabetes test strips, Mr. Mills agreed that they were expensive and offered that he could come to the clinic to test his blood. Mr. Mills also recommended that Sr. Garcia make an optometry
appointment because of his diabetes, provided information about a low cost clinic, and
indicated that while he knew it was expensive, it was important. During the post-
encounter interview with me, Sr. Garcia described how he was unable to see his
previous doctor and get medication for his diabetes because he did not have health
insurance.
P=patient R=researcher
P: Right, if your question started as why I came here in the first place, is because I don’t have insurance. It’s too expensive where I work at and I just can’t afford it on my pay. R: I know, I don’t get insurance either at my job, luckily I’m a student and can get it though the school, but otherwise. P: Right and I also, I skipped a lot of doctor’s visits and medicine because of that reason. I started getting real bad so I had to find another option. It was through word of mouth that I found this clinic which is helping a lot and I’m very grateful to be coming here.
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Researchers hypothesize that clinicians have a difficult time acknowledging patient’s narratives, especially those about poverty, because of a lack of experience and training in dealing with certain social and political issues, such as poverty, environmental pollution, or sexuality (Mishler 1984, Waitkin 1991). However, in two encounters when the patient brought up these issues, the clinician went further than simply talking about joblessness or health insurance and actively tried to help the patient.
Señora Ruiz, a Mexican immigrant in her early 40’s, came to the clinic to refill her thyroid medicine and to ask why her heart was racing (encounter 13). As the nursing student was asking the patient’s history, she asked how everything was going at home.
The patient responded that her husband had a heart attack one month ago. After the heart attack and subsequent stay at the hospital, her husband was fired from his job, lost his health insurance, and had to seek follow up treatment at the county hospital.
When they missed the first appointment, her husband was told he could not make a follow up appointment for three months. Thirty minutes into the encounter, Mr.
Kendall, the medical director and family nurse practitioner, joined the student nurse to see Señora Ruiz. After he heard about her husband, he took action.
K=Mr. Kendall, FNP S=nursing student P=patient
K: He is signed up for us to see him today? P: No. I need to x [unintelligible] him, he’s outside. K: Okay, does he have, where does he go to the doctor? P: Ah (..) we make ah appointment for my husband to go see um, therapy?= K: =Okay P: Um, but my husband loose the appointment and I call again ah, at the L[name] clinic? And they told me he, he need to wait three months because they had ah.
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S: They were booked. K: Yeah, well, whatever. Um, okay. Here’s the plan, okay? First of all, I want you to come back tomorrow at one o’clock. You have an appointment with Dr. [name]. Okay? And she’ll be able to, she’s smarter than I am. [P and S laugh] K: And then, ah, um, and then the other thing is, we want to check your husband today, want to check his blood pressure. But we also want you to talk with Ms. Kendall[social worker] tomorrow, okay? This is very important, she will be sure, this three months is not okay. P: No. K: So we’ll get Ms. Kendall [social worker] to help you on this, okay? So you came to the right place today, you’re gonna have to come back tomorrow, but you came to the right place today.
This excerpt demonstrates the possibilities when the clinician’s communication style makes it possible for the patient’s lifeworld to emerge. Because the student nurse asked many open ended questions during the encounter and allowed the patient to have control of the conversation, the patient told a story about her husband’s heart attack and subsequent problems getting follow up care. Later, the social worker helped
Señor Ruiz make an earlier appointment with the county hospital out-patient clinic, and the People’s Clinic provided medications until that appointment.
In summary, a predominant theme in patient narratives was financial situations or joblessness. In encounters where the clinician spoke with their patient about finances, or directly tried to help the patient, knowing the local health care system, other low-cost providers in the area, or having access to knowledgeable staff, such as the social worker, may have helped clinicians discuss their patient’s financial situation and offer solutions.
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II. Cultural Worlds in the Medical Encounter
Explanatory Models
Explanatory models are simply ideas and preferences about the diagnosis,
etiology, and treatment that people believe about a specific illness or disease. Because
models are partly rooted in symbolic and tacit health belief systems, models are not
static and can lack coherence (Kleinman 1980). Kleinman described important
applications of this model to clinical medicine. “The study of the interaction between
practitioner explanatory models and patient explanatory models offers a more precise
analysis of problems in clinical communications” (Kleinman 1980: 105). Thus, it is
presumed in cultural competence models that differences in explanatory models are at
the core of a problematic medical encounter. This hypothesis proved to be correct in
two encounters at the People’s Clinic.
Of the encounters observed and recorded for this research, half of the patients
introduced explanatory models, disease etiologies, or issues from their lifeworld during
the medical encounter. While six of these lifeworld discussions centered on poverty or
joblessness, a surprisingly small number of them dealt with culturally different
ethnomedical beliefs (i.e., explanatory models that varied from those of biomedicine).
The use of the word “cultural” does not imply that Western biomedicine is not also a
culturally created ethnomedicine (Gaines 1992a). The term “cultural difference” used in this analysis represents the difference in health beliefs that are rooted in traditional
Mexican ethnomedicine from those that are rooted in biomedicine.
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Two medical encounters described below were very different from each other:
one revolved around differences in disease etiology and treatment of la gripa, and the
other dealt with beliefs about the nature of AIDS and distrust of the biomedical system.
First Cultural Example
The first example in which cultural difference influenced the encounter was with a 33 year old Mexican immigrant woman, Señora Rios (encounter 20). Señora Rios asked for antibiotics for what she felt was a very strong infection (la gripa, a term which means a bad cold or the flu); in fact Señora Rios said four times during the encounter that she had an infection. Her symptoms of sore throat, coughing, and headache had lasted two weeks. However, the family nurse practitioner, Mr. Mills, believed she had severe allergies instead. Mr. Mills sensed that Señora Rios wanted antibiotics so he spoke with her about the differences in allergies, colds, and influenza and the reasons why clinicians do not want to prescribe antibiotics when there is no bacterial infection.
Mr. Mills offered this information using an illustrated anatomy book, and he drew a model of how multi-drug resistant bacterial infections occur with unnecessary use of antibiotics. The medical encounter lasted sixty-eight minutes, one of the longest I observed.
Señora Rios did not appear to understand Mr. Mills’ explanations, possibly because this information was relatively new to the interpreter who did a poor job of interpreting, and partly because it conflicted with Señora Rios’ health belief that she had
an infection that required antibiotics. Señora Rios’ body language and lack of
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communication following the explanation indicated that she was not satisfied with how
the encounter had unfolded. Mr. Mills invited the promotora to talk with him in a side conversation.
M=Mr. Mills, FNP P/I=promotora/interpreter P=patient, Señora Rios
M: So, and I know. So the more you.(..) She’s [the patient] not buying any of this. She’s not buying anything I’m telling her is she? Um, P: La tos? The cough? P/I: What about the cough? For the cough? Um, she’s gonna take something? It looks like she wants medicine. M: I know, I know, and I. [8 seconds] I’m trying to make the case to give her antibiotics but there’s nothing. I mean, I’m trying. (….) We only have this pain and pressure here, so it doesn’t sound like there’s a lot of infection here. So, let me ask you because this is where, this is a great communicate on thing. Are you getting the feeling, I mean, is she understanding about using antibiotics or not? And do you get a feeling, my feeling that I’m getting from her is to give her antibiotics. P/I: Yeah that’s what I feel too because she’s saying like, she’s been thinking like if I take antibiotics, you know? I will get better. M: And then it will get better. P/I: So she’s saying I don’t want to wait to take something to treat, if not she’s gonna have to come back and she, she’s saying like I don’t want to come back. M: A-huh, a-huh. Okay. P/I: My feeling. M: So okay, that’s what I was feeling but I can’t. P/I: I know.
There are two reasons for highlighting this excerpt. First, it is interesting that
Mr. Mills invited the promotora, as someone who may better understand the patient’s feelings, to discuss the situation, thus placing her in several roles. Initially, the promotora acted as an interpreter. Mr. Mills’ side conversation then placed her in the
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role of culture broker rather than a strict interpreter. In a third role, the promotora,
recognizing Señora Rios’ desire for antibiotics, advocated for these twice when she
asked Mr. Mills, “What about the cough?...She’s gonna take something? It looks like she
wants medicine.” And “…she’s been thinking like if I take antibiotics, you know? I will
get better.”
Second, in this excerpt Mr. Mills verbalized his frustration about his inability to
directly and clearly communicate with Señora Rios. He may have realized that the
information he provided was not satisfactory because the patient had different
ethnomedical beliefs about the presence of an infection and the appropriate treatment to cure the infection. At this point in the encounter, Mr. Mills decided to negotiate a
treatment plan to incorporate both sets of beliefs; he gave Señora Rios allergy medicine
to try for three to four days, but he also provided antibiotics if the allergy medicine did
not work. Mr. Mills obviously felt this encounter was unsatisfactory for Señora Rios and
he apologized to her twice at the conclusion of the encounter.
M=Mr. Mills, FNP P/I=promotora/interpreter P=patient, Señora Rios
M: Okay, sorry I was frustrating. P: Estas pastillas son para x [unintelligible] como eso?Para todo? Those pills are for x [unintelligible]? For everything? P/I: That pill, ah, that’s for like killing the symptoms? M: Mhmm. Absolutely. P/I: Claro que si. Yes, clearly. M: It looks like you probably have, a lot of this is being caused by allergies. [P coughs] P/I: Todo lo que se siento es con alergias. Okay? Everything you feel is with allergies.
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M: And that’s why, that’s my, and that’s why I’m feeling a lot of this is happening and that, and to tell you the truth, just taking antibiotics won’t do anything for your allergies. P/I: Obviamente tomando antibioticos no ayuda con la [unintelligible], okay? Obviously taking antibiotics won’t help with [unintelligible], okay? [P cough] P: Ay, xx xx [P cough] xx [P cough] M: It’s okay, your lungs are clear. So let me go and get that medicine for you. I’m so sorry. Don’t, I, I hope you won’t ah, [= P: It’s okay, it’s okay. M: I hope you don’t take it personally from me, I was just, you know what I’m trying to do, but we worked out a way, right?
In my post-encounter interview with Señora Rios, she expressed that she had a very strong infection that was caused by drinking a cold coke when it was warm outside.
She had been examined by a different clinician at the People’s Clinic on a previous visit for the same symptoms. He had given her Penicillin. Señora Rios said she wanted to see the same clinician because she felt he had done a good job and had given her appropriate medicine. Señora Rios said that she was not satisfied with this clinician, even though, ultimately, she received antibiotics, because he did not seem to notice that she had an infection. Likewise, Mr. Mills articulated frustration in the pharmacy.
He was unable to “connect” or communicate with the patient, yet, he gave her antibiotics against his better judgment.
Second Cultural Example
The second example was with a 54 year old Mexican immigrant woman, Señora
Moreno who disagreed with her positive AIDS test (encounter 21). Señora Moreno had visited the clinic a year before. She was told at that time that her lab test results were
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positive for HIV. However, at this visit, she used a different name and was seen as a new patient. Thus, the student nurse did not know that she had AIDS until later in the encounter.
At this visit, Señora Moreno had several sores on her face, ears, and mouth. She believed the sores were caused by an exposure to a cold surface and the cold weather, and not related to the AIDS virus. The excerpt below occurred before the woman’s positive HIV status was known.
S=student nurse P/I=promotora/interpreter P=patient, Señora Moreno
S: Is there a pattern to when she’s getting these sores? Like um, is there anything that she’s doing that brings them, any triggers? That she is aware of? P/I: No está cuándo le salen, no está haciendo algo que puede ser la causa? When they come, are you doing anything that you think might be the cause? P: Yo pienso que es por el frío porque yo cuando me resfríaba era por las paredes de la escuela, yo pienso que es por el frío. I think it might be the cold because when I got cold it was because of the school’s walls, I think it’s because of the cold. P/I: ¿Por el frío? From the cold? P: Si por el frío. Yes, from the cold. P/I: She thinks it’s because of the cold. S: The cold? Where she works? P/I: ¿Trabaja? Do you work? P: No, sí trabajo pero eso fue aquí en la escuela cuando fui a traer a los niños a la escuela. Estaba muy frío ahí en la pared y duramos como media hora en la pared y estaba bien fría.(…) Yo pienso que es por el frío. No, I do work but it was at school when I went to get the kids from school. It was very cold on the wall and we were standing like half an hour on the wall and I was cold.(…) I think it’s because of the cold. P/I: She thinks it’s because of the cold. S: Okay.
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During the physical examination, Señora Moreno explained that the sores were an
infection that also caused bone pain.
S=student nurse P/I=promotora/interpreter P=patient, Señora Moreno
S: Just open your mouth I’m gonna look at your teeth. [7 seconds] M-kay and can you go like, say ahhh. (…) Can you go ahh like that? P: Tengo una infección doctora [short laugh]. Ya tengo una semana que me duelen los huesos y me duele en los huesos y, y, y como que me quiere dar calentura. I have an infection doctor [short laugh]. It’s been a week now that my bones hurt, and it hurts in the bones, and, and, and like I were to have a fever. P/I: She will have like bone pain and she will get like fever for a week. S: Like associated with the pain? I mean her sores and stuff? P/I: ¿Esto está asociado con lo de estas? Is this associated with these? P: Sí es por eso. Yes, it’s because of them.
In Señora Moreno’s explanatory model, she described that the sores happened because she was outside in the cold for some time waiting for her children to get out of school. The cold from the school wall she was leaning on radiated out to her, which then caused infection, the sores, and bone pain. The student nurse did not respond to the patient’s explanatory model, indicating that the symptoms started because of the cold.
While the patient’s history was being taken, the lead promotora came into the room twice for different tasks. In hindsight, the promotora was checking on the patient’s identity. Soon thereafter, about 30 minutes into the encounter, the medical
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director, Mr. Kendall, entered the room with the lead promotora and confronted Señora
Moreno with her real name and situation. The clinicians and promotora tried to persuade her to go to the county hospital AIDS outpatient program. Señora Moreno repeatedly voiced distrust with the biomedical system and said that doctors were often wrong; she pointed out cases in which friends or family members were told they had diabetes but in fact, they did not.
P/I=promotora/interpreter P=patient, Señora Moreno
P: También a mi esposo le decían que tenía diabetes y no tenía. They also told my husband that he had diabetes and he did not. P/I: Ah, si. She said that someone told her husband he has diabetes but he don’t have it. P: Y el doctor le afirmaba que si tenía y él que no tengo, y fue con los bomberos y le dijeron que no tenía And the doctor affirmed that he had it and he didn’t, and he went to the firemen30 and they told him he didn’t have it. P/I: Bueno como aquí el examen que le hicieron le salió que era positivo. Well since the [HIV] exam that they did here was positive. P: Si, a veces salen así, como te digo que a mi esposo también le han dicho eso que sí y no tiene, no tiene diabetes, él no tiene. Yes, sometimes they come out that way, as I’m telling you they told my husband the same, that yes, and no, he doesn’t have diabetes, he doesn’t have it.
Señora Moreno so distrusted blood/lab tests and doctors that, in the next
example, she also said that her husband was diagnosed with AIDS, but he did not have
it. In the next utterance she repeated again that her husband was told he had diabetes
when another test indicated that he did not. It was not clear whether her husband had
two wrong tests, one for AIDS and another for diabetes; whether she was confused
30Various city agencies hold periodic health fairs where the community can receive free health screenings. 200
about the diseases; or whether, in the midst of the charged back and forth exchanges between clinicians and patient, she misspoke and said “AIDS” when she meant
“diabetes.”
P/I=promotora/interpreter P=patient, Señora Moreno
P: Si, si, si, si. Este a mi esposo no le digo y también a otra señora creían que eso tenía, tenía SIDA, pero él no tenia SIDA, tenía esto de aquí en la garganta. Y mi esposo también el doctor le quería dar la medicina. En esta clínica de aquí, una que está por aquí. Yes, yes, yes, yes. Well I’m telling you is my husband, and also this other lady they thought that that was what he had, AIDS, but he did not have AIDS, he had this thing here in his throat. And the doctor also wanted to give my husband the medicine. In this clinic here, one that is close around. P/I: L[clinic]? P: A-huh. Dice tú “tiene diabetes” dice mi esposo “pero no tengo diabetes.”“Y vas a tomar la medicina,” y “no, no me la tomo porque no tengo diabetes” y fue mi esposo con los bomberos y le dijo chequéeme mi sangre porque me están afirmando que tengo diabetes y le dicen no tienes diabetes. A-huh. They said “you have diabetes” and my husband said “but I don’t have diabetes.” “And you will take the medicine”, and “No, I will not take it because I don’t have diabetes” and it was my husband went to the firemen and told them to check his blood and “they tell me that I have diabetes” and they tell him that he doesn’t. P/I: Si usted dice que no lo tiene vaya al P[county hospital] a que le hagan otros estudios, no pierde nada. If you say you don’t have it, go to P[county hospital] so that they can do other analyses, you have nothing to lose. P: Pues si, porque como ledigo mucha gente ha ido con los doctores y el doctor le ha dicho a mi esposo tienes que tomarte la medicina. Well I do, because I have told you a lot of people have gone to the doctors and they have told my husband that he has to take the medicine.
For 17 minutes Mr. Kendall and the promotora spoke with Señora Moreno about
HIV/AIDS and transmission. They recommended that she talk with her husband and family about it as well as other medical facilities where she seeks treatment. The
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encounter ended with Señora Moreno twice asking for medicine to help the sores and
Mr. Kendall explaining both times that the sores were from the HIV virus, and that she
needed to get treatment at the county hospital AIDS outpatient program.
Señora Moreno repeatedly denied that she had AIDS, and, based on her
comments and demeanor, it seemed highly unlikely that she was going to follow up with
the outpatient program. While she was obviously motivated to seek treatment for her
sores, she was not going to accept a diagnosis of AIDS. Señora Moreno’s distrust could
have been compounded by not having a sustained relationship with a clinician whom
she trusted and who was familiar with her case. Because of this situation, my interview
was brief and did not follow the interview schedule. However, Señora Moreno again
mentioned her explanatory model during the interview.
R=researcher P/I=promotora/interpreter P=patient, Señora Moreno
R: Do you understand the disease? P/I: ¿Si entiende la enfermedad esa? Do you understand that disease? P: Si pero yo pienso que no la tengo. Yes but I don’t think I have it. P/I: She thinks she doesn’t have it. R: Why? P/I: Por qué? Why? P: Porque yo me siento bien, nada más es por el frío que tengo esto. Because I feel well, it’s only because of the cold that I have this. P/I: She understands it but she said she has this for a cold.
Señora Moreno left hurriedly after the nursing student gave her printed information in Spanish about the skin lesions, the disease in general, and coping strategies. In the afternoon debriefing meeting, the nursing student verbalized to her
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classmates and Mr. Kendall that she was frustrated about the encounter and wished she
could have helped Señora Moreno better understand her situation.
These two encounters were the only ones of the thirty observed and recorded in
which patients voiced information in the medical encounter that was “cultural” and
fundamentally different from biomedicine; both patients and clinicians had different
beliefs about what was wrong and what the course of treatment should be. Clearly,
when differences appeared in these two examples, all participants were dissatisfied,
and, miscommunication was apparent. Thus, these encounters are classified as negative
medical situations in which agendas and expectations were not met.
However, it would be incorrect to deduce that the other 28 patients did not have
ethnomedical beliefs that were different from those of the clinicians’ simply because
they were not voiced during the encounter. The post-encounter interviews illustrate
that some patients who had satisfactory or “successful” medical encounters also had
cultural differences in the etiology or treatments of their conditions that were not
vocalized in the encounter.
III. Culture Difference in the Post-Encounter Interview
While with clinicians, patients mostly talked about lifeworld issues that focused on personal problems and money concerns. On the other hand, during the post- encounter interviews, patients discussed culturally different narratives in response to
specific questions related to their explanatory models. This information can be
categorized into two areas: etiology and treatment preferences. 203
Etiology
The decisions people make about their illness largely depend on their
understanding of the etiology, or cause, of the illness (Sobo 2009). Because of this importance, my interview contained questions to elicit their etiology:
7. What do you think causes [illness]? How did you get [illness]? 8. What other treatments have you tried to help with [illness]?
I did not organize etiologies with regards to previous anthropological classification, such
as Young’s (1986) internalizing versus externalizing systems or Foster’s (1976)
naturalistic verses personalistic models. Rather, I was interested in whether patients’
etiologies were similar or different from a biomedical model.
Seventeen patients discussed the etiology of their illnesses in the post-encounter
interviews (21 patients completed an interview; the other nine completed a survey).
Patients’ models of causation can be categorized as biomedical etiology, mixed etiology,
or cultural etiology.
Biomedical Etiology
Of the 17 patients who spoke with me about the cause of their illnesses, eight
patients (47%) gave a strictly biomedical explanation. Señor Hernandez, from the first
case study in Chapter four, described an etiology of type II diabetes in which the
pancreas supplies too much sugar to the body.
R=researcher P/I=promotora/interpreter P=patient
R: Okay. Um, what do you think caused your diabetes? P/I: ¿Y que piensa que le causó la diabetes? And what do you think caused the diabetes?
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P: No come entonces todos el páncreas le pasa azúcar al cuerpo cuando pasa hambre. Son muchas las [unintelligible] y el páncreas ya no puede con toda el azúcar que tiene acaparada aquí. Así me dijo el doctor y yo creo que sí. If you don’t eat, then the pancreas provides the body with sugar when you’re hungry. There are many [unintelligible] and the pancreas can no longer stand all the sugar it has stored. That’s what the doctor told me and I think that’s it.
Most patients with diabetes described a disease etiology that included the pancreas and sugar production although as with Señor Hernandez, the answers were vague and often incomplete. Other answers included behavioral causes such as generally eating non-nutritional foods, smoking, and not taking good care of his or her health. Señora Lopez, on the other hand, discussed how diabetes “runs in her family,” a genetic explanation:
R=researcher P=patient
R: ¿Cuándo fue la primera vez que se enteró que tenía diabetes? When did you learn you had diabetes? P: Oh, hace seis, seis años. Oh, six, six years ago. R: ¿Qué pensó cuando oyó que tenía esa noticia? What did you think when you heard the news? P: Pues me sentí mal porque como mi hermano la tenía. Y parece que está en la familia porque la tiene mi mamá, mi hermano mayor, el que sigue el segundo y luego el más chiquito, y mi hermana la que tengo en México también tiene diabetes. Well I felt bad because my brother had it. And it looks like it’s in the family because my mom, my older brother, the next one and also the smallest, and my sister that is in Mexico, all have diabetes. R: So toda su familia ha estado con la diabetes por mucho tiempo. So your family has been with diabetes for a long time. P: Sí. Yes.
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Mixed Etiology
Five people (29%) expressed a mix of biomedical and traditional cultural etiologies. In this example, a woman from Mexico (encounter 12) described how her explanatory model of diabetes changed from a traditionally Mexican view to incorporate a biomedical view.
R=researcher P/I=promotora/interpreter P=patient
R: Um, what do you think causes diabetes? P/I: ¿Qué es lo que usted cree causa la diabetes? What do you think causes diabetes? P: Antes, antes yo creía que era. Según era, antes platicaba la gente que era este por la tension. Pues después tuve una plática aquí con los de aquí de la em...clinica me dijeron que es por el la pancreas no está funcionando bien. Before, before I thought it was. According to, before people talked that it was because of tension. Well then I had a talk here with the people here from the um... clinic told me that it was the pancreas that is not working correctly. P/I: Okay, ah. Most of the people know that diabetes come from tensions. But when she came to the clinic she knows that it wasn’t from tension it was from people who are sick from (…) R: Pancreas? P/I: Pancreas. R: What tensions? What type of tension? P/I: Tensiones como, ¿qué clase de tensiones? Tension like, what kind of tensions? P: Es, sí por es preocupaciones…yo creo que ambos tienen razón. It’s, yes because of worries... I think both are right.
This patient recalled that most people feel that diabetes is caused by tensions
and worries, but that once she came to the clinic, she was told that diabetes is caused
by the pancreas not working correctly. She incorporated the clinic’s biomedical
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knowledge into her understanding of diabetes and said she believed that both
explanations are right.
Cultural Etiology
Four people (24%) provided explanations that differed from a biomedical
etiology in their entirety. There was no pattern related to patient diagnosis and a
culturally different disease etiology, though three of the four had a chronic disease (see table 4.1). Cultural explanations ranged from theories about hot-cold imbalance and
stress to susto.
Two people thought they became ill because of a thermal imbalance. The
following excerpt is from the interview with Señora Rios (encounter 20) discussed above
whose belief about her severe infection (la gripa) was at odds with the clinician’s belief that she suffered from allergies.
R=researcher P/I=promotora/interpreter P=patient
R: Um, how do you think you got the illness? What caused it? P/I: Que lo que causo. What caused it? P: Um. (5) Pienso, bueno? X xx nada yo le xx [ininteligible] Um, I think, well? Xxx[ininteligible] P/I: She thinks that she drank a very cold coke when she was hot. So. R: mhmm. P/I: Last week. And that started the cough. And then everything else came from the cough.
The hot-cold dichotomy, popularized in the anthropology literature by Robert
Redfield (1934) and George Foster (1994) contends that all foods, herbs, and some
other substances (such as iron) have a temperate as well as metaphoric value of “hot”
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and “cold.” As with the etiology example above for la gripa and the woman who was
HIV positive, some patients believed illnesses can be caused by hot or cold insults to the body that upset the body’s equilibrium. Therapies for the most part tend to conform to the “principle of opposites” so that a cold remedy works best for a hot illness and vice versa (Foster 1994).
All instances of illness stemming from a hot-cold imbalance in this research
revolved around thermal imbalances of the body being unusually hot, often from the
Texas heat, and ingesting something cold, therefore putting the body at risk. Foster
(1994) also found from his extensive research in Mexico that the thermal temperature of food or drink is cited more frequently as a factor leading to illness than the metaphoric value. In the example above, the patient was hot outside and drank a cold coke, thereby disturbing her natural balance which put her at risk for illness. The cold drink caused the cough which led to la gripa (the flu or bad cold), an infection that required antibiotics.
Some patients believed that a specific instance of strong emotion or anger caused their illness. One person from the 30 interviews spoke of this etiology
(encounter 18), which was common throughout my two years of research at the clinic.
R=researcher P/I=promotora/interpreter P=patient
R: Okay. What do you think caused your high blood pressure? P/I: ¿Sabe o qué piensa usted que le ha causado la alta presión? Do you know, or what do you think caused the high blood pressure? P: Pues yo pienso que eso me habla a mí que yo tenía la niña de ella y se las vine a dejar y yo lloraba mucho, yo pienso que por eso me enfermé.
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Well now I think about this that you talk to me about, I had her child [her daughter’s child] and I came to leave them and I cried a lot, I think that is why I fell sick.
In other words, the patient believed that her deeply felt emotion at leaving her
grandchild had caused her illness.
Other people had similar explanations that involved a specific instance of fright
or deeply felt emotion. One afternoon, two nursing students, a promotora and I went to visit Señora Torres, a 77 year old woman who lived alone in the back of a house with no running water. She suffered from uncontrolled diabetes with blood sugar over 500.
She explained that her diabetes was caused by a specific life event that was very upsetting.
I asked Señora Torres if other people in her family have diabetes. She said one son, who was in jail, and her sisters and brothers all had diabetes. I asked what she thought caused her diabetes. She said her anger and emotions. She said that someone killed her husband and son and since then she’s had diabetes. N[promotora] told me that a lot of people in Mexico believe that emotions or anger cause disease. [field notes 8-29-07]
Susto is most often described as a sickness that results from fright and is generally classified as a Latin American culture-bound syndrome (Simons and Hughes
1985). As described in the literature, susto is due to a startling event that may cause part of the self or soul to separate from the body. Upsetting situations may also cause susto (Rubel, et al. 1987). Although none of the participants in this study specifically said that susto caused their illness, they described personal traumatizing events that they believed triggered their illnesses or made their body more susceptible to illness.
Participants could not explain why or how the event caused the illness; a traumatic
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event was simply a factor in the development of the illness. Several medical anthropologists and researchers from the medical community report similar findings, i.e., that Mexican-Americans and Mexican immigrants connect the cause of type II diabetes to a traumatic event or series of events (e.g., Hunt, et al. 1998; Poss and
Jezewski 2002).
Treatment Preferences
The second area related to patients’ explanatory models discussed during the interview was their preferences about treatments. I asked four questions specific to treatment preferences:
8. What other treatments have you tried to help with [illness]? 11. What medicine are you taking? 12. How long have you been taking that medicine? 13. Do you feel it is working for you?
Nineteen of the thirty patients were diagnosed with chronic diseases such as type II diabetes, high cholesterol, or hypertension. Each of these patients was taking at least one prescribed oral medication. All patients with a chronic disease reported during the post-encounter interview that they were satisfied with the prescription medicine they were taking and they believed the medicine was helping.
Nine patients were diagnosed with type II diabetes; of these, three (33%, encounters 5, 12, 22) also talked about taking some form of cactus in conjunction with their medicine. Two of these patients had stopped taking the cactus because they said it did not help them feel better. One man who was diagnosed with depression said he took herbal remedies in the past but had stopped them because they did not help his
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feelings of sadness and anxiety (encounter 27). In the encounter below (12), the patient described the reasons why she took dry cactus to help with her diabetes.
R=researcher P/I=promotora/interpreter P=patient
R: What else have you um, tried to help with the diabetes? P/I: ¿Qué ha tratado usted de actividades por la diabetes? What activities have you tried for the diabetes? P: Ah, un tiempo tome una, es coma una yerba seca que me mandaron de México. Ah, for some time I took a, it’s like a dry herb that they sent from Mexico. P/I: Ah, for a very long time she was taking some kind of um, herb, natural herb from Mexico. R: Herb, a-huh. What was it? P/I: Cómo se llama? What’s it called? P: Es como si fuera um, jicama seca, así cortadita en trocitos pero es bien amarga. Viene seco. It’s like as if it was um, dry jicama, cut in bits, but it’s very bitter. It comes dry. P/I: Viene seco, okay. It’s dry, okay. It’s like some kind of I don’t know, jicama. It comes dry, okay. R: Jicama, a-huh. P/I: Very dry, so that it looks like, P: Yo le decía que con lo amargo, eso decian en México que con lo amargo se bajaba el azúcar y yo me lo tomé mucho tiempo. I was telling you that with the bitterness, so they said in Mexico that with the bitterness the sugar would go down and I took it for a long time. R: Okay, are you still taking the jicama? P/I: ¿Todavía está tomando la jicama? Are you still taking the jicama? P: No. [laughs] R: No. P: No, porque no se me quitó nada. [laughs] No, because nothing happened.
Similar to the illness model for a hot-cold imbalance, this patient described how
a bitter herbal treatment was said to cure her diabetes, an illness that is caused by too
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much sugar. Whereas a relatively small number of participants spoke about using
alternative therapies such as herbs or cactus to treat diabetes, other researchers have
found that the number of Mexican immigrant participants who used “home remedies”
to augment their medial prescriptions was as high as one-third of the participants
(Brown and Hanis 1999).
Course and Outcome
Other aspects of Kleinman’s explanatory model theory, such as course and
outcome of the illness, were not as fully discussed with all patient participants
compared to comments about their illness etiology and treatment preferences. Patients
who had a chronic illness talked about behavior changes that they knew were important
but were difficult to strictly adhere to, such as regular exercise or a special diet. Several patients brought up that during the course of their work day, they were on their feet and that should “count” as their exercise, or that they could not fix special meals when they were the only ones in the family who required a healthy option.
Patients with diabetes, in particular, told stories of friends and family members who had suffered from diabetes and eventually died from complications associated with diabetes. These stories made the reality of the disease very stark and scary for them and served as personal reminders of what might happen. When talking about loved ones who had died from diabetes, though, patients did not attribute blame. That is, they refrained from commenting whether death was just an inevitable progression of the disease, or if these loved ones did not do enough to control their diabetes.
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Patients who described a “mixed” etiology of cultural and biomedical beliefs, or
those who augmented their biomedical oral medications with herbal treatments,
indicate fluid movements between traditional and Western ethnomedicines. This data
supports the view of pluralistic explanatory models of disease as patients talked about
traditional and mixed etiologies of their illness and four spoke about herbal treatments
(Leslie 1980, Poss and Jezewski 2002). These patients, while having more traditional
beliefs about their illness, also are regular patients in a biomedical clinic and take
prescribed Western medicines.
This research also contradicts prior assumptions that people would not utilize
“modern” health care if they suffered from an illness believed to be caused by “cultural”
agents (Pelto, Bentley, and Pelto 1990). Many participants had multiple etiologies and
ideas in their explanatory model and most were influenced by the biomedical model.
When people move across borders, either within Mexico, or from Mexico to the U.S., their traditional illness models may undergo transformations as they encounter new ideas and experiences. These transformations may be gradual, assisted by repeated exposure to Western medical concepts and experiences with medications. This is especially true for patients with chronic illnesses that require periodic medical visits in which the patients are likely to receive reinforcing information about Western biomedicine.
Considering the high number of Latin Americans who have diabetes, it is surprising how little is known about their knowledge, beliefs, practices, preventative
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measures, and treatment preferences towards the disease. According to a national
examination survey, Mexican Americans are almost twice as likely as non-Hispanic
whites to be diagnosed with type II diabetes. They have higher rates of end-stage renal disease, caused by diabetes, and they are 50% more likely to die from type II diabetes as non-Hispanic whites.31 Further research is needed to investigate early prevention
practices for Mexican immigrants who suffer from diabetes, as well as other illnesses.
IV. Discussion
To summarize, patients and clinicians in this sample of 30 encounters exhibited a
range of communication strategies to share medical and lifeworld information:
• Nine followed a pattern outlined by Mishler (1984) of an “unremarkable
interview,” meaning there was no lifeworld talk. All but one patient reported
satisfaction with this type of visit.
• Six followed a pattern not typically found in the medical literature, a pattern I
labeled “clinician initiated lifeworld.” In these encounters the clinician tried to
establish rapport to better understand his patient by making casual conversation
about the patient’s life. In most instances, patients did not engage by talking
about their lifeworld.
• Fifteen patients talked about their lifeworlds; of these, 12 lifeworld
conversations were engaged by the clinician and three were ignored. Six
31http://minorityhealth.hhs.gov/templates/content.aspx?ID=3324 accessed 3/2010 214
patients focused their lifeworld conversation on finances or joblessness; in two
of the 15 encounters, cultural differences were observed.
Clearly this examination indicates that patients share lifeworld narratives in the medical encounter to a greater degree than some medical research suggests (Mishler
1984; Tuckett, et al. 1985; Ainsworth-Vaughn 1998). A major theme of lifeworld narratives in this sample of predominately first-generation Mexican immigrants was finances and joblessness, socio-economic issues rather than cultural differences. This data further show that when patients and clinicians have discordant cultural backgrounds or speak different languages, an automatic “cultural barrier” does not exist as many cultural competence models assume, even when patient’s health beliefs are culturally different from biomedicine.
In two encounters, cultural differences were vocalized by the patient. While anthropologically interesting, the focus on this research is not Mexican ethnomedical beliefs per se. The focus is centered on the information vocalized in the medical encounter and how participants grapple with the issues that are communicated during the encounter.
When differences in ethnomedical beliefs between patients and clinicians materialized, both encounters were problematic and unsatisfactory for the clinician and patient. The post-encounter interview data show that other patients had cultural differences in ethnomedical beliefs, but these patients did not speak about these beliefs with the clinician. Their encounters were satisfactory and their expectations were met.
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Thus, in these cases it is not cultural differences in isolation that are problematic, but rather that their presence may cause problems.
The question becomes, whys some patients who had cultural differences related to disease etiology or treatment preferences vocalized those differences and some did not. Additionally, how did the clinician respond to the differences in health beliefs and how might other strategies facilitate a mutually acceptable treatment plan? The next two sections will discuss these crucial questions.
Which Lifeworld Information is Discussed with Clinicians
Ethnographic research from multiple medical practices in the United Kingdom by
Barry and colleagues (2000, 2001, 2002) help add a new lens from which we can analyze this data. A relatively new concept in the medical communication literature is that of patient agendas. An agenda includes the reasons the patient came to the encounter and it encompasses the patient’s concerns, emotional and social issues, diagnostic ideas, illness fears, and expectations (Barry, et al. 2000). The concept of patient agenda is similar to the explanatory model concept but it encompasses the specific goals of what the patient wants to happen from this specific medical encounter. Barry, et al.
(2000, 2001) research revealed that patients in general practice had several agenda items (5+), or specific reasons for being at a clinic, but they did not voice their full agendas in the medical visit. When they did, patients often voiced agenda items that were in the biomedical realm; social and emotional topics were the most difficult and least likely items to be discussed (Barry, et al. 2000).
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This present study also examined patient agendas as a means to triangulate and
compare the patient’s primary goals of coming to the clinic to what was observed during
the encounter. The post-encounter interview focused on three specific questions aimed
at eliciting patient agenda items:
1. Why did you come to the clinic today? 2. What did you want the doctor to do for you today? 3. Did you want a specific medicine or treatment for your illness?
The answers to these questions provided information that was compared to the
patients’ lifeworld narratives during the clinical encounters to determine whether or not
there was a relationship between the two. This comparison finds that all but three
lifeworld narratives were related to the patient’s agenda. The majority of patients
brought up lifeworld issues when 1) their lifeworld intersected with their agenda, and 2)
the communication strategies of both participants enabled lifeworld narratives to
emerge in the encounter.
The telling of a lifeworld narrative, then, does more than bring the human
element to the encounter, a patient’s feelings and experiences. Lifeworld narratives can
function as a communication strategy that allows patients to voice their knowledge and
agenda items in a linguistically appropriate way. Telling a lifeworld narrative can be a
polite and deferent way for patients to exercise power over the encounter (Ainsworth-
Vaughn 1998). For example, in the first case study from chapter four, Señor Hernandez discussed lifeworld narratives that dealt with treatments he did not want to have for his
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arthritic knee. He told these stories because one of his agenda items, reported to me
during the interview, was to get his knee examined and treated.
Thus, the research points to several hypotheses. First, patients who held
culturally different health beliefs about their illness, but did not talk about them in the
encounters, did not do so because their health beliefs were not associated with their
specific agenda for that visit. In two encounters, for example, the lifeworld issue that
intersected with the patients’ agenda happened to be culturally different ethnomedical
beliefs. In short, the woman with la gripa came to the clinic to secure antibiotics for her illness, an illness that was caused, she believed, by drinking a cold coke on a hot day.
She did not believe, as Mr. Mills did, that she had allergies. Thus, she vocalized her health beliefs, that she needed antibiotics, because they intersected with her agenda.
Other hypotheses about why more narratives did not contain culturally different health beliefs include: 1) financial issues were more pressing than culturally different health beliefs for patients, 2) most of the patients with cultural health beliefs also had explanatory models that incorporated biomedical treatment, and 3) patients did not discuss their health beliefs for fear of being criticized; they have learned what not to say to clinicians. This last hypothesis may be less valid at the People’s Clinic because patients said, over and over, that they trusted this clinic and the promotoras who worked there. In fact, they recommended this clinic to their neighbors and family.
Fundamentally, all communication and dialogue is co-constructed in the moment, by each participant. Participants may have intended to talk about a particular
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issue, but decided not to; or there may have been no communicative space to do so.
The concept of patient agendas helps to recognize the function of lifeworld narratives
and improve our understanding of why certain lifeworld narratives may have been
brought up while others were not.
Clinician Response to Cultural Health Beliefs
Culturally competent clinicians and those who utilize patient-centered strategies
are encouraged to elicit and discuss their patients’ health beliefs and explanatory
models (see Chapter three for an overview of these theories). The data from this
research suggests that differences in ethnomedical models between patients and
clinicians pose challenges for both patient and clinician in a medical encounter. Two
encounters in particular contained differing explanatory models which produced
dissatisfaction for clinician and patient alike and hindered the patient’s agenda from
being fully realized and acted upon.
What were the strategies used by participants in these two encounters and might additional or different strategies have resulted in mutual acceptance or satisfaction? Both clinicians asked detailed and open ended questions. Both female patients provided their explanatory models of la gripa (severe infection, like the flu) and sores/infection, respectively, and believed that a thermal imbalance caused their illness, although the woman with la gripa did not overtly verbalize this in the medical encounter. Both clinicians provided their respective explanatory models of allergies and
HIV.
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However, in both encounters, after patients stated their health beliefs, the clinicians employed a health education strategy instead of discussion. For instance, in the first example, Mr. Mills believed the patient to have allergies, but he realized that the patient believed she had an infection and wanted antibiotics. Mr. Mills engaged in a side conversation with the promotora to confirm that the patient “wasn’t buying any of it.” He then attempted to educate the woman by providing information about bacterial infections, viral infections, and allergies. He talked about the dangers of using antibiotics when they were not medically necessary and even drew several diagrams about multidrug resistance. Likewise, with the HIV positive patient, the clinicians focused their efforts and time on providing education about HIV-AIDS.
In both instances, the patient did not understand the educational information nor believe what the clinician said to be true. In the first example, after hearing the information, the patient told the clinician, “Okay I don’t understand everything you have told. I just want something to make me better, I don’t want to return with a cough.” In the second example, the woman with HIV denied several times that she had HIV and repeatedly said she did not trust the U.S. medical system. Thus, an educational approach on “correct” health beliefs was not a successful strategy in either situation.
The explanatory model was designed to be a tool for negotiation between clinician and patient to allow clinicians to talk with their patients about health beliefs.
Increasingly, it is only used to elicit the patient’s model without engaging in a dialogue about both models and how they may overlap (McNees 2001). Clinicians can be
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challenged by their patients’ cultural and health beliefs coupled with the belief that
their own biomedical knowledge is more correct, factual, and rational. “The underlying
goal of such behavior seems to be to render "difference" comprehensible from the
biomedical perspective, in order to promote better control of patient behavior” (Hunt
and Arar 2001: 350).Therefore, even when clinicians ask patients about their knowledge and health beliefs, these beliefs are often viewed as “misconceptions” with the need on
the part of the clinician to re-educate the patient’s health knowledge.
What was missing from both encounters was a conversation and negotiation
about health beliefs with a view that they could both be valid. Mr. Mills never asked the female patient with la gripa, “Why do you think you have an infection that needs antibiotics?” Or, “What caused your infection?” Similarly, the clinicians who saw the woman with HIV did not get to the root of her beliefs and her distrust with the U.S. medical system.
As in the first cultural example, even after Mr. Mills negotiated a treatment plan that included antibiotics which should have been acceptable to the patient, the patient reported in the interview that she was not satisfied because she felt Mr. Mills should have seen that she had an infection and trusted her feelings. Instead of “education” in these situations, this data suggests it may be more effective for clinicians and patients to discuss a common view of the illness and a treatment plan that is possible and practical, given the specific circumstances of patients’ environments.
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Summary
Many anthropologists have documented culturally different explanatory models
or health beliefs of specific illnesses such as diabetes, high blood pressure/hypertension,
depression, etc. They have written extensively about Central and South American
cultures, customs, healing beliefs and practices, and their ethnomedicines (for example,
Foster 1953, 1994; Rubel 1960; Kiev 1968; Ingham 1969; Clark 1970; Garro 1986; Finkler
2004). The early work of Foster (1953), Rubel (1960), Clark (1970) and others moved ethnomedical research in anthropology away from studying the exotic practices of immigrants to a richer understanding of health and illness in the broader sociocultural arena. They also foreshadowed the problem of culturally appropriate practices in medicine and low utilization rates of biomedicine among immigrants and minorities
(Browner 1994).
Building on the information gleaned from previous anthropological research, this study looked at the next obvious question: what happens when explanatory models of patients and clinicians conflict in a medical encounter? Are cultural competence strategies, alone, sufficient to engage both patient and clinician in discussion that results in a satisfactory medical encounter?
The results documented in this chapter detail the type of information patients and clinicians share during a medical encounter, as well as the role that lifeworld narratives can play to introduce patient agenda items. It also demonstrates that cultural differences in health beliefs, while present between patients and clinicians, only
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surfaced in two of thirty encounters. Despite the importance and role of health beliefs or explanatory models in cultural competence, this research showed that when clinicians elicited these responses, they did not know how to use the cultural information they obtained. They did not know how to move beyond this phase to a meaningful dialogue and negotiation process with the patient.
The next chapter will introduce the third primary participant, the interpreter, or promotora. Chapter six highlights the various roles that the promotoras held at the clinic, the communication processes that fostered accurate interpretations, and how promotoras shaped the course of the medical encounter.
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Chapter Six: Medical Interpreting
“Language is the framework in which the world view of a culture is molded, and it describes the boundaries and perspectives of a cultural system. A language barrier disarms a communicant’s ability to assess meanings, intent, emotions, and reactions and creates a state of dependency on the individual who holds the keys to the entire process – the interpreter” (Putsch 1985: 3344).
Research has associated language barriers with the increased potential for misdiagnoses and inappropriate treatment, the need for repeat visits, inadequate informed consent, and dissatisfaction in the quality of communication and care among patients and clinicians, among other outcomes (Elderkin-Thompson, et al. 2001; Flores, et al. 2003; Simon, et al. 2004; Dysart-Gale 2005). Interpreters are often perceived as the solution to bridge these barriers.
This chapter brings attention to the clinic promotora and interpreter, her relationship within the encounter, and her roles at the clinic. Medical interpreters influence the texture of information in the medical encounter, the amount of information provided, and what is understood amongst participants. Further, despite the fact that the uniquely powerful role of an interpreter is situated at the juncture of negotiation and exchange, little has been said about the linguistic and social role of interpreters in medical encounters (Davidson 2000; Hsieh 2010).
One objective of this study was to broadly understand how English-speaking clinicians, interpreters, and Spanish-speaking patients perceived the challenge of communicating across a language barrier. Most similar studies have surveyed or interviewed either clinicians, or interpreters, or patients (e.g., Kline, et al. 1980; Baker, 224
et al. 1996; Baker, Hayes, and Fortier 1998; O'Leary, Federico, and Hampers 2003).
Inclusion of all three groups permitted a triangulated view of the issues and concerns
facing the primary participants in bilingual medical encounters. This research was
conducted to answer such questions as, what is the role of medical interpreters and
how are they trained? How do interpreters shape the course and outcome of a medical
visit? What is the relationship between clinicians and interpreters? Responses to these
questions are offered in this chapter.
I. The Complex Dynamics of Medical Interpreting
Accuracy, completeness, and impartiality are among the standards most often
cited as the ethical pillars of professional medical interpreting (Cross Cultural Health
Care Program; National Council on Interpreting in Health Care 200532). Generally
speaking, interpreters must overcome several major challenges in their efforts to respect these three interlocking standards. These challenges include, among others:
1) Dissimilarities between languages, which may prevent certain stock (including
medical) phrases, idioms, metaphors, and other language formations from being
easily and meaningfully converted from one language to another. Languages
that are phonetically and otherwise very dissimilar to one another, such as
Burmese and English, make this process more challenging.
2) Differences between biomedical and everyday discourse, including ‘doctor-talk’
and ‘patient-talk’ (Shuy 1974; Mishler 1984). The former is often arcane and
32http://www.ncihc.org/mc/page.do?sitePageId=57768andorgId=ncihc, accessed 3/2010 225
rooted in clinical concerns, while the latter is reflective of the patient’s everyday
language and individual and social concerns.
3) Normative differences between patients and/or families who do not share the
biomedical notions about truth telling and the right to know, the need to treat,
and other moral and ethical assumptions. These and other differences can
strongly affect interpreted informed consent and ethics consultations, among
other health care interactions (Kaufert and O'Neil 1990; Simon, et al. 2003).
Thus, an interpreter who is asked to translate an encounter between an English- speaking, Caucasian clinician and a Spanish-speaking, Mexican patient will likely need to bridge: 1) linguistic differences between English and Spanish, 2) discursive differences between biomedical professionals and laypersons, and 3) normative differences between European-American and Mexican culture. Furthermore, a triadic medical encounter will entail different communicative norms than in monolingual talk, for example specialized speech activities such simultaneous interpreting (Hsieh 2010).
Shifting Conceptions of the Interpreter’s Role
Many professional codes of ethics and medical institutions in the U.S. place heavy emphasis on the notion that interpreters should function merely as conduits, or faithful echoers, of the information flowing between clinician and patient. As scholars have suggested, this view of the interpreter’s role is rooted in a distinctly American, as well as Western, model of information flow (Kaufert and Koolage 1984; Dysart-Gale
2005). In this view, information travels in a linear fashion, moving between senders and
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receivers, with the interpreter serving as a “conversion point” in the transmission
process. Critics of this model have emphasized that it does not take into account the
fact that mere conversion would leave much information unintelligible given the
discursive, cultural, and other differences evident among health care senders and
receivers (Haffner 1992; Dysart-Gale 2005). The conduit model and its mechanistic
positioning of interpreters is potentially also demeaning and disrespectful of the
interpreter’s capacity for creative, compassionate, problem-solving thought and action
(Kaufert and Putsch 1997).
Accordingly, some researchers have sought to broaden the interpreter’s role and to conceive of it in less linear and more interactive terms. Anthropological, communications, and other literature advocates that interpreters be allowed to act as linguistic as well cultural “consultants,” “mediators,” “advocates,” and “brokers”
(Kaufert and Koolage 1984; Erzinger 1991; Haffner 1992; Dysart-Gale 2005). The potential merits of broadening the interpreter’s role to include these and other functions include enhanced understanding on the part of the patient and clinician, increased patient satisfaction and comfort, and improved self-image among
interpreters. Cultural brokerage on the part of interpreters can also play a key part in
establishing trust between biomedical practitioners and local communities in parts of
the world where biomedicine is not necessarily the first and most trusted health care option (Kaufert and Koolage 1984).
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II. The Role of Promotoras at the Clinic
Three years prior to my entry, the People’s Clinic hired promotoras, or lay female
health promoters, to provide interpreter services for their increasingly Mexican
immigrant population. During my two years of observation, there were three core
promotoras, including one “lead promotora,” and two to three promotoras who worked for a few months before quitting or being fired. The promotoras were all single mothers who had high school educations. All but one was a first generation Mexican immigrant.
Promotoras acted in several roles simultaneously, such as interpreter, advocate,
culture-broker, educator, and at times, even para-clinician (Davison 2000). The
promotoras were often the “face” of the clinic: they were the first ones to greet
patients; they took the patient’s vital signs and then later interpreted for the patient;
and the promotoras, because of clinic outreach activities in the neighborhood and at the two local elementary schools, were often known within the community as health workers.
Promotoras as Familiar Agent
The significant and strong connection of promotoras to the clinic became clear at
one of the clinic fundraising luncheons. The lead promotora, Nina, was asked to give
brief remarks about her role at the clinic.
Nina stood up at the front of the room and began to read the prepared paragraph that she had written. Then, as she was nearing the conclusion of her remarks, she looked up and folded the paper. She tried to speak, but her voice shook. She was obviously emotional. She held her hand out to Mr. Kendall (clinic medical director) who was sitting nearby and motioned for him to stand next to her. She held his hand for support and said, “When I first came here, it 228
was as a patient. They helped me so much when I had nowhere else to go. When I see the people coming in here, they see Louisa and I and they know they have found a place to trust. They don’t have anywhere else to go…” She started crying. Then Louisa, another promotora started crying; a man at my table began to tear up, as were some people sitting behind me. It was a powerful moment, not only for Nina, but for those in the audience, i.e., potential donors to the clinic. [field notes 1-19-07]
As Nina’s story illustrates, the promotoras, because they were from the local community and were also first generation Mexican immigrants who faced similar hardships, represented familiar faces to patients, faces that fostered trust. During an interview, one family nurse practitioner described this connection as a “comfort” factor:
During the interview Mary told me that many times she tried to communicate in Spanish but the patient didn’t understand even though she was saying the words correctly. Then, when the promotora came into the room and said the exact same thing, the patient understood. I asked Mary what she thought was happening. She said, “…I think it’s a comfort thing. When you’re sick and you are vulnerable, you need a connection. Sometimes we can’t be that connection.” [family nurse practitioner interview]
Thus, promotoras not only interpreted the clinicians’ words, but were viewed as a connective force or familiar agents for the Mexican immigrant patient population.
Promotoras as Advocate
Promotoras acted as advocates for patients at the clinic as well as for people who needed help obtaining healthcare outside the clinic. Examples have been shared throughout this dissertation of advocacy at the medical encounter level, such as a promotora advocating for antibiotics for a patient. Some instances of advocacy helped patients receive health care they otherwise would not have received. The following is
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an example of how promotoras acted as an advocate when helping a patient who did not know how to navigate the U.S. health care system.
Nina, the lead promotora, told me about a confused elderly woman who came to the clinic. The woman brought a letter addressed to the county hospital, written by a ministry clinic a few miles away. The letter provided health information about the woman and asked for an appointment as soon as possible; she had cervical cancer with an increase in vaginal bleeding in the last few months. However, it was evident to Nina that this woman did not know where she was and what she was doing. Eventually Nina drove the woman to her home so that she could see if the woman lived with family members. Nina helped the woman gather required documents to apply for the county hospital “insurance” card. Ms. Kendall, the clinic social worker, called the hospital and eventually, after speaking to several people including a doctor about the seriousness of the situation, made the woman an appointment for the next week. [field notes 9-14- 06]
This woman, who was later confirmed as mentally disabled, was sent from a
local ministry clinic to the large county hospital with only a letter detailing her medical
history. Once Nina realized the woman did not have the mental capacity to secure the
required documents, complete the forms, and make an appointment at the county
hospital, she guided the woman through this process and acted as her interpreter and
advocate by accompanying her to all the appointments for treatment of her cervical
cancer. Nina was not financially reimbursed for this work, but over the course of my
research at the clinic Nina helped several older women in similar situations. She once
told me that she hoped someone would do the same, for example, if her grandmother
were in need.
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Promotoras as Culture-Broker
The culture-broker role was not as obvious and prevalent as the other roles held
by promotoras held, possibly because cultural differences did not surface in the medical encounter as frequently as other topics, such as finances and joblessness. In the following example, the family nurse practitioner (FNP)/midwife was seeing a 31 year old
Mexican woman for a follow up visit. The patient’s test results from her prior exam showed she tested positive for Chlamydia.
The FNP frankly told the patient that she had Chlamydia and explained the disease, as well as the fact that it was treatable. She asked the patient if she had any sexual partners other than her husband and the patient replied, “no.” The patient mentioned that she didn’t know if she could tell her husband because when she told him she had a pelvic exam he got mad and asked what she did that she needed that exam. The FNP reinforced that she needed to talk to her husband because she could be treated, but if they didn’t use a condom [patient shook her head at this] and he didn’t get treated, then the patient could be re- infected again, which may cause infertility. The patient asked another question and the FNP said, “The question she should be asking is if she wants to be married to someone who is sleeping with other women.” Before the promotora translated this, the FNP asked her a couple of times, “Is that a culturally appropriate thing to say?”and the promotora said “yes.”[field notes 11-2-06]
Thus, when promotoras helped clinicians understand a cultural difference, it was
often to explain a traditional herbal remedy such as taking cactus for diabetes or how to
say something in a culturally appropriate way. Noticeably, during the two encounters
that contained differences in cultural health beliefs, discussed in Chapter five, the
promotoras did not step outside their interpreter role to act as a culture-broker.
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Promotoras as Educator
A forth role that promotoras performed was one of educators. Since the
promotoras’ job duties included providing basic health care information to patients,
such as signs of hypo- and hyperglycemia (high and low blood sugar level), they often
spoke with patients informally about their illness and treatment. During one medical
encounter I observed, the clinician stepped out of the room for a few minutes and the
promotora and patient discussed the patient’s life and his diabetes.
After the clinician left, Louisa and the patient started talking about the patient’s job. He was a painter from El Salvador and worked in Mississippi on new houses being built. He comes back here to see his family every six weeks. Then the patient asked a question about his diabetes medication and Louisa told him how to take his medicine and that it was really important. He said that his mother died from diabetes and then said that his priest told him he was cured from diabetes and didn’t have to take medicine anymore. Louisa told him there were two kinds of help, one from God and one from medicine. Then the clinician came back in the room and they stopped talking. [field notes 10-12-06]
Although patient education was an important aspect of their job, promotoras had difficulty providing formal education. Most times clinicians had to prompt promotoras to speak with the patient on a certain subject. The clinician might say, “Be sure to go over signs of hyperglycemia.” Additionally, even though promotoras were one of the responsible team members for implementing a type II diabetes intervention program, I never observed them reviewing a program lesson with a patient who had diabetes.
Several times the medical director, Mr. Kendall, asked my advice about how to encourage promotoras to take more responsibility for patient education and patient
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well-being. He wanted to move their responsibilities from interpreting and taking vital signs to initiating conversations about diabetes, obesity, or smoking. He said that he hoped my observations of the clinic could help him find a way to instill a sense of ownership in the promotoras.
Observations indicated that a primary reason for this lack of ownership was that no training was provided for promotoras. They were not required to have formal training in medical interpreting nor did the free clinic offer formal training. This lack of training seemed to exacerbate their already unclear job roles and responsibilities.
Training could have instilled a sense of ownership and responsibility across their roles and solidified their accountability in each role. A training program may also have helped ensure quality and accurate interpreting, and fostered increased clinician trust in the promotoras, an issue that each clinician spoke about in his or her interview.
Promotora as Para-Clinician
Finally, some promotoras took on the role of para-clinician (Davidson 2000). This occurred when the promotora gave her own medical advice, added or omitted a patient’s medical history or symptoms to the clinician, or took over the role of the clinician. While I never observed an encounter in which the promotora gave her own advice, two clinicians remarked on the role during their interviews. The pediatric nurse practitioner (PNP) explained that she did not mind when the promotora gave medially sound advice, but thought it inappropriate when the advice was incorrect.
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PNP: …I’ve actually heard the interpreter give misinformation. Ah, just not saying what I had just said, throwing in a bit of her own advice, which was inappropriate for the patient. R: If she had given good advice would that have bothered you? PNP: No, no good advice does not bother me. R: So it’s not that she said something different from what you said. PNP: No, I don’t need to be interpreted literally. But I don’t want to hear, she was recommending Vicks Vapor Rub, which you do not want to use on children because it has camphor in it which is a poison. She just threw that in, her own personal advice. Now it’s fine if it weren’t something I would never ever advocate or recommend it because toxicities are so different for children and adults.
The role of para-clinician occurred more frequently when promotoras were in
encounters with nursing students. Because nursing students were still learning the
correct sequence of questions to ask about a particular disease, the promotoras, as
women familiar with the routine nature of questions, sometimes controlled the medical
encounter. The following example occurred in the waiting room; the young patient and
her mother were the first people in line to see the clinician, and a student nurse was
attempting to take a brief history.
The patient was a one year old girl and she had been crying for over 15 minutes in the waiting room. The nursing student did not know what to do. Finally, after a couple of minutes, the student asked the mother if she had given the patient anything for her fever. The mother responded that she had given the child Motrin two hours ago. Then the promotora started asking her own questions in Spanish: how was the cough, was it productive, what color was the phlegm, how long had the patient had the fever. Then the promotora told the student the answers. When the student finally took over this role, she asked her questions, but looked at the promotora for guidance. [field notes 11-2-06]
Thus, as some promotoras gained knowledge, they began to “claim” medical expertise. While this role may be acceptable for some clinicians, as with the pediatric nurse practitioner above, other clinicians may chafe at this intervention if the
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interpreter’s actions are not transparent. Regardless of the promotora’s medical
knowledge, her usurping of the clinician’s role might lead to clinician distrust.
II. Accuracy in Interpreting
Clinicians have been found to rate “accuracy of interpretations” above other
issues they are concerned about in interpreted encounters (Abbe, et al. 2006). Because
of this importance, the majority of research on medical interpreting reports the frequency and kinds of errors interpreters make (Davidson 2000, 2001; Elderkin-
Thompson, et al. 2001; Flores, et al. 2003). In fact, many variables can affect the standards of accuracy and completeness of a translation, such as interpreter and clinician level of training and competence, nature of the environment, duration of the encounter, and the speakers’ communication behaviors and preferences. This is particularly important as clinicians often use medical jargon and/or speak in lengthy dialogue making it difficult to interpret accurately (Abbe, et al. 2006).
However, the analysis for this research project was not as concerned about the frequency of translational errors made by participants (since this type of data may only be helpful for the specific participants involved in that specific encounter) as which processes or communication strategies facilitated accurate interpreting and which factors correlated with inaccurate interpreting. This information would be more useful to a broader audience. The following data represents the major types of translational errors that participants made and the communicative context surrounding the error.
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Clinicians as Interpreters
Many errors occurred when monolingual clinicians did not use a promotora
during the entirety of the encounter. For example, some nursing students began the
medical encounter without a promotora present or they dismissed the promotora after the history taking part of the encounter was over, thus having no interpreter during the time the physical exam was conducted. Regardless of the reason for dismissing the promotora, when she was not in the room, the encounter suffered from errors or incomplete patient medical histories and information about the chief-complaint. When
the clinician tried to “make do” with his or her Spanish skills, the patients did not speak
as much during the encounter, or there was a significant amount of misunderstood
dialogue. The following example occurred after the nursing student dismissed the
promotora.
The male patient complained of stomach pain and told the nurse he thought he had a parasite infection. After the physical exam, the nursing student handed him a plastic cup with a lid. The patient asked, "Excremento?" (Excrement?) and the student said, “Si.” (Yes) He repeated "Excremento?" and again the student said, “Si.” Even though the student might have learned the value of using interpreters if I had not intervened, I quickly said, "No, orinar, solamente orinar" (No, urinate, urinate only). [field notes 2-27-07]
During their interviews following the medical encounter, patients spoke about
the lack of interpreters, usually at health facilities other than the People’s Clinic. Some
patients discussed situations in which interpreters were not available and they did not
understand the clinician, or that because there was not an interpreter, they were turned
away from seeing a clinician. In general, patients preferred clinicians who spoke
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Spanish, but all patients said they were satisfied if they had interpreters to help them
communicate.
False Fluency
A second type of situation which led to errors in interpretation was when the
promotora lacked the knowledge necessary to interpret. Two promotoras who were hired during the period of my research simply did not have the required medical language fluency in Spanish or English to interpret accurately. Because there was not a formal training process, these promotoras were hired and began working despite their lack of knowledge. As there was not a formal review process of promotoras’ abilities, several months might pass before complaints accumulated by clinicians. The following example demonstrates the confusion that ensues when the promotora does not know how to translate simple body parts.
The female patient had a lot of pain in different places and the two nurses were visibly frustrated with her vague symptoms; they talked to each other, saying that her pain did not make sense. One reason for their frustration was that Cindy, the promotora , did not translate words correctly. For example, when the nurse examined the patient’s lower abdomen, the patient said that it hurt. The nurse followed up by asking, “Does she still have her uterus?” Cindy hesitated, and instead of asking about the patient’s uterus, she asked if the patient had stomach pain. The woman said yes, she did have stomach pains, she had gastritis. Cindy responded to the clinician, “Yes.” The nurse asked if the patient had been vomiting or having diarrhea and if so, for how long. Cindy asked the patient how long had she had gastritis and the patient answered for three years. Cindy told the nurse “Yes, for 3 years.” [field notes 10-26-06]
In this example, Cindy was clearly not fluent in medical terminology. Her errors moved the focus from the patient’s uterus to her stomach, and told the nurses that the patient had been vomiting or having diarrhea for three years. In actuality, the patient
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really said she had gastritis for three years. However, neither nurse paused to clarify this contradiction, nor were they listening to what was being translated.
Many clinicians told me that because they were concerned about accuracy, they monitored and listened closely to what the interpreter said in Spanish even if they were not familiar with the language. Some Spanish words are similar to their English counterparts, for example, stomach in Spanish is estómago and vomiting is vómitado, so clinicians could more readily understand if an interpreter was incorrect. Another strategy clinicians employed was to listen for congruence in the length of talk between what they said and what the promotora said. In the following example, the clinician repeatedly listened to the Spanish translation and frequently questioned and corrected the promotora (encounter 24).
FNP=family nurse practitioner P/I=promotora P=patient
FNP: Hola. Me llamo C[first name]. Hi. I’m C[first name]. So um, ah, what brings you in? P/I: ¿Qué es lo que tiene ahora? What do you have now? P: Pues que ando con las alergias, tengo tos por las alergias. Ya tengo un mes así. Well, I have allergies, I have a cough because of the allergies. It’s been a month like this. P/I: Her cold and her um sinus, FNP: Okay um P/I: She’s been a month like this. FNP: Sinus or allergies? P/I: Allergies. FNP: Okay. P/I: I call them both, sinus and allergies. It’s not the same, right? FNP: No.
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The promotora translated the patient’s illness as a cold and sinus when the patient had said allergies. The clinician was familiar enough with the Spanish words and questioned the promotora. Later in the same encounter, the clinician told the patient
that because she had high blood pressure she needed to be careful when taking over-
the-counter cold or sinus medicine.
FNP=family nurse practitioner P/I=promotora P=patient
FNP: Tell her, because she has high blood pressure, she needs to be careful and not take decongestants because that can raise her blood pressure. P/I: Dice que tiene que cuidar ah, She says you have to be careful ah, How do you say that? FNP: Decongestant. Like Sudafed, especially. P/I: How do you say that in Spanish? FNP: Or like, ah, like Tylenol cold and allergy. P/I: No mas como el Tylenol es para la gripa, sí se puede, pero tiene que tener mucho cuidado con la otra pastilla porque se le puede subir también la presión. You know how like Tylenol is for the cold, you can, but you have to be very careful with the other pill because it can increase your blood pressure. P: Oh. P/I: Puede tomar el Tylenol. You can take the Tylenol.
The patient, who was on medicine for hypertension, was cautioned by the
clinician to avoid over-the-counter decongestants that could raise her blood pressure.
However, the promotora was not familiar with the term “decongestant” and asked the
clinician twice to clarify the word. Instead of defining decongestant, the clinician gave
two popular examples that were known to raise blood pressure, Sudafed or Tylenol Cold
and Allergy. The promotora did not double check her understanding with the clinician
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and made a potentially serious clinical error when she told the patient that Tylenol Cold
was safe and would not raise her blood pressure.
Omissions
Errors of omission occurred when promotoras did not fully translate words, phrases, or whole sentences that were spoken. Typically, information was omitted by a promotora for three common reasons. First, promotoras omitted information when they either did not understand the information or they felt it did not add value to or detract from the dialogue. In this example the promotora omitted information from the patient (bolded) about her bunions (encounter 21).
N=student nurse P/I=promotora/interpreter P=patient
N: Okay, can you ask her how long has she had the bunions on her feet. P/I: ¿Hace cuánto tiempo que tiene lo de los pies? How long have you had that on your feet? P: Ya tengo como un año. It’s been close to a year. P/I: For a year. P: Además que me duele mucho estar así. Also, it hurts a lot to be like this. N: And are they getting bigger and bigger too? [ P: Pienso que por los zapatos. I think it may be the shoes. P/I: ¿Se están haciendo más grande? Are they growing bigger? P: mhmm
In this example, the promotora omitted the patient’s symptoms that her bunions are painful and that she believed them to be caused by her shoes. In context, the
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interpreter may have felt that the symptoms did not add to or detract from the dialogue.
Omissions also have the potential to change the quality or texture of talk. The promotora in the next example excluded the clinician’s apology for the time the patient had to wait. This patient waited over an hour in the exam room and his responses throughout the encounter were very curt and abrupt. Had the patient heard the apology he may have been more participatory and satisfied with his visit (encounter 26).
FNP=family nurse practitioner P/I=promotora/interpreter
FNP: Okay, Mr. [last name]. I’m [name], I’m the nurse practitioner here. I’m sorry you had to wait so long. Uh, nevertheless. Okay. Can you have a seat up here? P/I: Tome asiento. Have a seat.
Second, promotoras omitted information when clinicians spoke several sentences at once without pausing for the promotora to interpret. At the end of one encounter, the nursing student gave the patient new medicine for her diabetes and dyslipidemia (high cholesterol). However, because she spoke several sentences at once and used medical jargon, such as dyslipidemia, the promotora omitted the instructions for how to take both medicines as well as other important information (encounter 19).
S=nursing student P/I=promotora/interpreter
S: And this is Actos, and this is one pill, one time a day. And for these, can you tell her to look for if she’s having some signs of dizziness or light headedness, or like her heart starts pounding or something, it’s called hypoglycemia? It means her blood sugar is getting too low and to drink some orange juice or have some candy, something like that. P/I: Si se marea o si le duele la cabeza, dice que tome como jugo de naranja o un dulce que es lo mismo de las medicinas, porque le está bajando. 241
If you get dizzy or you get a headache, she says that you should take an orange juice, or a candy, which is the same as the medicine because it’s going down. S: Okay, um, this Tricor, where is this one, okay, this one is for her dyslipidemia. She needs, the important one about this is one pill one time a day. The important one about the Tricor? This one has side effects of nausea and vomiting and diarrhea? So can you tell her. P/I: Esta tiene efectos secundarios de nauseas, diarreas o vómitos. This one has nausea, diarrhea, and vomit as side effects.
Again, the promotora gave incomplete information and did not explain to the patient how and when to take her medications, potentially causing a clinical error.
Finally, promotoras omitted information when clinicians spoke in a certain way that did not signal a “patient communication” code, such as “teaching” codes or “talking to oneself” codes. These are known as “frames,” which are mental cognitive structures surrounding a piece of discourse marked by pitch, register, and nonverbal cues which allow the hearer to make sense of the information (Tannen and Wallat 1986, 1987).
Because many encounters included student nurses and family nurse practitioners, they frequently spoke with one another about the patient’s symptoms or illness in a
“teaching” code. The manner and style in which they spoke to each other, often facing or looking at each other, while using medical jargon, signaled to the promotora not to translate the information to the patient.
However, in some encounters, the clinicians, after discussing the patient amongst themselves and deciding on a course of action, forgot to then communicate the information back to the patient. In the following example, a male patient came to
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the clinic for his lab results. A family nurse practitioner (FNP), nursing student,
promotora, and I were in the room.
Both nurses were speaking at once making it difficult for the promotora to translate. The nurses did not know why the patient was sent for a blood test at his prior visit, if there was a specific reason. The nursing student asked the patient if he knew why he was sent for labs and he said no. The FNP and student reviewed the lab results and the FNP told the student that the results ruled out anemia and high cholesterol. But this was not translated to the patient because it was said in “teaching code.” The FNP then dismissed the promotora and conducted the physical exam. She put the stethoscope up to his chest and said in English, “breathe deeply.” The patient did not know what to do. She continued the physical exam in English. The two nurses left the room without saying anything to the patient. The patient then asked me, “Was there anything wrong with my labs?” [field notes 10-12-06]
This type of omission, caused by a specific clinician frame, or way of speaking, became apparent when a professional interpreter volunteered one day at the clinic.
The interpreter, an attorney from Venezuela who worked as a courtroom interpreter while studying for the U.S. bar exam, brought attention to these kinds of omissions. A family nurse practitioner (FNP), nursing student, volunteer interpreter, and I were in the room.
The FNP told the nursing student that the patient’s diabetes was under control. He opened her chart and talked with the student about the patient’s urine analysis and said that her weight loss helped her blood sugar level. The new interpreter asked, “Should I translate that?” and the FNP said “Yes.” At the end of the encounter, the FNP instructed the student to review the symptoms of hypoglycemia (low blood sugar) since the patient had lost weight and was doing really well. Again, the interpreter asked if she should translate that and the FNP responded positively. [field notes 1-12-07]
Thus, when a trained interpreter was faced with dialogue spoken in a different frame, she clarified with the clinician whether she was supposed to translate that dialogue
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rather than omitting it. The trained interpreter likely was introduced to national codes of professional ethics that stressed that interpreters need to interpret all and only what was said (Cross Cultural Health Care Program; National Council on Interpreting in Health
Care 2005).
Many errors in interpreting occurred, then, because the relationship between promotora and clinician was unclear or not defined and defaulted to a hierarchical one with clinicians having the higher status and authority. Even when promotoras were uncertain of how to translate jargon or when the clinician spoke several sentences at once, promotoras did not follow up to clarify or ask the clinician to slow down and repeat what was said. This could be due to a lack of training about the mechanics of the interpretive process coupled with the fact that their role was perceived as less powerful than the role of clinician. The higher status of the clinician, though, tended to place the entire burden of accuracy with the promotora.
III. Promotora-Clinician Relationship
Trust and Transparency
In their interviews, clinicians reported a concern with the accuracy of interpretations and level of transparency, above other factors. This finding is comparable to other research on clinicians’ concerns in interpreted medical encounters
(Abbe, et al. 2006). Trust is the degree to which clinicians, interpreters, and patients believe in and rely on each other’s actions. Transparency refers to the level of understanding and awareness participants have of each other’s actions in the 244
interpreting process (Abbe, et al. 2006). Trust, then, is inextricably linked with levels of transparency.
Nursing students, who were often unfamiliar with using interpreters in general, and especially these specific promotoras, reported experiencing a greater lack of trust between themselves and promotoras. Nursing students reported that this lack of trust was primarily caused because they did not receive training on how to work with interpreters in school or at other medical facilities where they were employed. One nursing student said she could tolerate minor inaccuracies as long as the promotora communicated the “big picture.” In her interview she said, “I have a trust problem with interpreters. Are they really saying what I am saying? It’s okay as long as the big picture was conveyed.”
On the other hand, clinicians who had an established working relationship with the promotoras, such as the family nurse practitioners, had greater trust. For example, one family nurse practitioner who volunteered weekly mentioned that trust in a promotora was something that came with time and repeated exposure between the two.
Mr. Mills mentioned by name the two promotoras he trusted a “great deal.” When I asked why, he said that since they worked together frequently, these two promotoras both knew his next question or utterance almost before he spoke it and he trusted them because he had confidence that they both knew what they were doing. However, he said that sometimes he wanted to tell the patient something in a certain way and he was unsure of the manner in which the promotoras said things on their own. [interview with Mr. Mills, FNP]
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Mr. Mills’ comments in the interview highlighted two main themes related to trust and transparency. First, as specific clinicians and promotoras worked together, they learned and became familiar with the other person’s style and even their routine dialogue. In the following example, Mr. Mills and Louisa, who worked together often, exhibit this pattern (encounter 30).
FNP=Mr. Mills P/I=promotora/interpreter P=patient
FNP: Alright, the blood pressure P/I: La presión The pressure FNP: Is 158 over 78 P/I: Son 158 con 78 It’s 158 over 78 FNP: And so (.) P: ¿Es mucho eso o es poquito? Is that a lot or a little? P/I: Es mucho. It’s a lot. P: Oh P/I: Ahí le va a decir. He’ll tell you. FNP: So this is what your blood pressure is today. [ P/I: Eso es lo que tiene ahorita This is what you have right now P: mhmm FNP: What we’d like to see P/I: Lo que a él le gustaría mirar es eso, 120 sobre 80 What he’d like to see is this, 120 over 80 P: hm FNP: So this number you’re doing good. P/I: Este número lo está haciendo bien pero el de arriba This number means you’re doing good, but the one above FNP: This number we still have some work to do to bring this down [ P/I: En este no, tiene que ponerle mucho trabajo In this one not, you have to put a lot of work onto it FNP: The closer we can get to this number the better. 246
[ P/I: Lo más cerca que pueda llegar mejor. A cien veinte.
The closer you can get to it the better. To 120. P: A-huh
In this example, the information flow was facilitated by Mr. Mills speaking in
short phrases and partial sentences (“the blood pressure”…“is 158 over 78”…“what
we’d like to see”). Since Mr. Mills and Louisa had frequently worked together, she was familiar with his educational style and what he tended to say when a patient’s blood pressure was elevated. In these instances, Louisa began her translation usually after the first few words of Mr. Mills’ utterance (bolded).
Louisa often used simultaneous interpreting when working with Mr. Mills, and
Mr. Mills complimented this style with his short, jargon-free phrases. Simultaneous interpreting can provide an illusion of monolingual talk because of the smooth transitions between speakers. Participants tend to like simultaneous interpreting because it keeps the focus on the patient and clinician (Hsieh 2010). Mr. Mills did not interrupt Louisa and he waited until she was finished translating to speak his next phrase.
A second reason to highlight Mr. Mills’ interview comment is that he touched on issues of transparency in an interpreted situation. Mr. Mills remarked that he sometimes wanted to tell a patient something in a particular way and he was unsure of the degree to which promotoras said things on their own. Some clinicians, when they
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wanted patients to hear information in a certain way, monitored the promotora’s words and prompted the correct words. For example (encounter 22):
Dr=Doctor P/I=promotora/interpreter
Dr: Okay, I want to examine her, I want to make sure while I have you and we’re sort of on a roll, that she understands that we’re probably going to put her on some medicine to relax the blood pressure. P/I: Te van a ponerle si la medicina para baja la pression. She’s going to give you medicine to lower the pressure. Dr: Okay, and use the words relax the blood pressure.
While clinicians verbalized these uncertain feelings about the process of interpreting outside the encounter, they rarely engaged in a dialogue with the promotora about the process of interpreting. I observed only four occasions out of 90 in which the clinician instructed the promotora, as with the example above, or initiated a discussion about the interpreting process. For example, prior to the encounter, one nursing student told a promotora with whom she had not worked with before, “I’m going to talk and look directly to the patient and you translate what I say.”
Thus, in order to facilitate transparency, the data show that instruction from the clinicians and promotoras, prior or during the encounter, may result in a more positive encounter. Accuracy and completeness may be enhanced if a clinician stated, “This next part may be a little difficult to understand. Let me know if I need to repeat something,” or if participants requested a back-translation such as, “Could you please repeat what you just said.” Further, interpreters could be more transparent by explaining to the clinician or patient when they have altered or culturally brokered messages to promote sensitivity and understanding.
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This level of transparency may help alleviate some of the tension around the
contradictory expectations that are placed on interpreters, and may advance better
understanding among clinicians and patients of their respective communication needs,
priorities, and preferences. For patients, a transparency rule or norm could increase
patient involvement and sense of control. In short, clinicians and interpreters could
encourage patients or families to ask clarifying questions or to provide clarification
themselves.
Teamwork
The communication processes that facilitated accuracy and trust occurred when
clinicians and promotoras worked as a team. For example, Louisa (promotora) and Mr.
Mills(FNP) utilized a teamwork strategy that I label “double-checking.” While double-
checking can make the encounter a bit longer, it is a strategy used to verify that the
clinician correctly heard and understood the patient’s comment or answer. For
example:
FNP=family nurse practitioner P/I=promotora/interpreter P=patient
FNP: Okay, okay. When was the last time you took your medicine? P/I: La última vez que toma medicina. The last time you took the medicine. P: Hoy, en la mañana. Today, in the morning. [ [ P/I: Today in the morning. [ [ FNP: Today Okay. (3 seconds) Okay, um you took ‘em this morning. P/I: Se la tomó esta mañana, ¿verdad? You took it this morning, right?
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P: Sí. Yes.
Mr. Mills asked the patient when he last took his medicine and the patient responded that he took them today, in the morning. In his next turn to speak, when Mr.
Mills could have asked another question, instead he used back-channel listening cues of
“today” and “okay,” and double-checked what he heard with a statement, “Okay, um you took ‘em this morning.”Instead of answering Mr. Mills’ question with, “Yes,” Louisa translated the question back to the patient who confirmed, yes. This pattern continued throughout the encounter where Mr. Mills rephrased what he heard and Louisa translated it back to the patient who then provided confirmation or clarification.
A few times the clinician and promotora engaged in a side conversation to clarify with each other what was occurring in the encounter. Chapter five provides an excellent example in which Mr. Mills stopped the encounter to speak with the promotora about the patient’s desire for antibiotics.
In a second example, Mr. Mills was treating a male patient who was diagnosed with depression and anxiety. The patient had not taken his antidepressant medication for five months. This was the first time Mr. Mills, Elena (the promotora), and the patient had met. My observation notes of the visit commented on their body language: “Mr.
Mills sat about two feet in front of the patient facing him with his hands in his lap, focused on the patient. Elena also sat close to patient so that she, the patient, and Mr.
Mills made a triangle.” This physical positioning elevated the promotora to a full member, and equal partner, in the dialogue rather than a less visible member.
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After talking about the patient’s symptoms of anxiety and depression, Mr. Mills asked a question with the goal of determining whether or not the patient was experiencing symptoms of psychosis. This meaning of the standard psychiatric question did not translate well so Mr. Mills and Elena discussed it.
FNP=family nurse practitioner P/I=promotora/interpreter P=patient
FNP: Let’s see and you’ve never had any, have you had any feelings of ah, seeing something that you know wasn’t there or hearing something that nobody else could hear? P/I: Usted tiende a sentir que alguien le estaba hablando o- You tend to feel that someone is talking or- [ P: Sí, a veces si me pasa eso. Yes, sometimes it happens. P/I: Sometimes. FNP: Sometimes. Can you tell me about that a little bit? P/I: ¿Le puede explicar eso un poquito? Can you explain that a bit? P: Como el dice como que no se, como que oigo cosas así nada que ver que yo no sé no por qué. Like he says, like I don’t know, like I hear things that have nothing to do with anything, I don’t know why. P/I: ¿Cómo qué es lo que oye? What is it like what you hear? P: Oh, como no se como. Oh, like I don’t know. P/I: ¿Que alguien le está hablando, que alguien le está diciendo algo? That someone is talking, that someone is telling you something? P: Sí como que se me viene a la mente como que yo he estado viendo eso pero no pero no sé por qué. Yes, it like comes to my mind like I have been seeing this but I don’t know why. P/I: ¿Pensamientos, palabras? Thoughts, words? P: Algo así. Something like that. P/I: Como que alguien le está hablando. Like someone is talking. P: mhmm 251
P/I: Like somebody else is telling him something, like thoughts. FNP: Okay, and do you, do you, does it sound like you’re hearing voices? P/I: Usted escucha voces? Do you hear voices? P: Dentro de la mente, dentro de la mente y se me olvida después. Inside my head, inside my head and then I forget. P/I: He thinks he forgets about it. FNP: Okay, what do, when you hear those things, what are they saying to you? P/I: Cuando usted escucha esas cosas, ¿qué es lo que le están diciendo? When you hear these things, what are they saying? P: Escucho tantas cosas [short laugh]. Como que deberías hacer esto o ya lo hiciste o cosas así pero no se ni por qué. I hear so many things. Like you should have done this or you did or things like that but I don’t even know why. P/I: Cosas que debiste hacer eso y no lo has hecho, ¿cosas así? Things that you should have done and you haven’t, things like that? P: Sí, habla así. Yes, like that. P/I: He wants to explain it. He’s like saying that he’s thinking that x. He had to do it, but he don’t feel like doing it but the voices are telling him he needs to. FNP: Okay, okay and so E[promotora], it sounds like it’s hard with the translation to say, is it like a voice that he hears? Or is it his, him telling himself. You know what I’m saying? P/I: Okay, yes, okay. Es una voz que usted escucha que le está diciendo o usted mismo se lo está diciendo? Is it a voice that you hear that is telling you or is it you telling yourself? P: No, es como yo mismo, que es la gente más bien. No, it’s like myself, that it’s like people rather. P/I: It’s like himself. FNP: It’s himself. Okay, okay, gotcha.
Prior research indicates that interpreted psychiatric visits in particular may prove the most difficult for all participants due to the sensitive nature of the interview, the stigmatizing symptoms associated with mental illnesses, the different interpreter competencies required in psychiatric versus non-psychiatric encounters, and the fact that a large part of the actual “exam” relies on verbal communication (Klein, et al. 1980,
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Marcos and Trujillo 1981, Putsch 1985, Diaz-Duque 1989). Additionally, there are
serious questions about the applicability of Western mental health diagnoses cross-
culturally (Barrett 2004).
Mr. Mills asked the patient a standard psychiatric question, phrased in a specific
way, but the meaning of the question did not necessarily translate well into Spanish (see
Barrett 2004 for a discussion of the difficulty in translating symptoms of psychosis).
Compounding the situation, the promotora did not provide a translation of the patient’s
comments to the clinician; for the majority of the excerpt, the patient and promotora
spoke together without including the clinician. This lack of transparency, even in an
encounter in which the clinician and interpreter usually worked well together, may be
why Mr. Mills paused and asked the promotora to clarify both his meaning and what
was being said by the patient.
In summary, clinicians reported that accuracy and trust was a main concern
when working with promotoras. Transparent actions, such as back-translations or
having conversations about the interpreting process may help participants with these
concerns. A relationship based on the understanding that clinicians and promotoras
both are responsible for accurate interpretations may also lead to better patient care.
IV. Discussion
Promotoras held numerous roles at the People’s Clinic. By virtue of their
familiarity, their presence portrayed trustworthiness to patients; they also were culture-
brokers, advocates, educators, and at times para-clinicians. However, barriers at the 253
organizational level, such as a lack of training for promotoras, meant that these roles were not always fulfilled in the manner expected and desired. A lack of training also allowed some promotoras to work as interpreters despite their deficient knowledge of medical terminology and understanding of the interpretive process. Additionally, clinicians and patients were not taught how to work in an intercultural space nor were they experienced in working with interpreters. This lack of training for all participants was one of the most critical weaknesses in the clinic’s efforts to understand and utilize theories of cultural competency.
Other key factors that disrupted the seamless provision of language services within the People’s Clinic are various types of errors that occurred in interpretation, and the processes that facilitated inaccurate as well as accurate interpretations. When clinicians were unfamiliar with interpreted encounters, or had not often worked with a specific promotora, they felt distrustful of the promotora and situation. This distrust was often compounded by the low level of transparency in participant actions and roles.
However, with repeated exposure to one another, clinicians seemed to gain trust in the promotora’s ability to provide accurate interpretations. The data also suggests that when clinicians and promotoras engaged in dialogue aimed at increasing transparency, and engaged in actions that fostered teamwork, trust deepened and accuracy increased.
Better Practices in Medical Interpretation
Robert Putsch’s quote at the beginning of this chapter is instructive about the ways in which interpreters are viewed in medicine and research. He ascribed extreme
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power to medical interpreters and described them as those who “hold the keys to the entire process” (see also Davidson 2000, 2001). New research, however, has emerged
that alters this notion of interpreter as institutional gatekeeper. Despite the smattering
of linguistic errors attributed solely to interpreters in the literature, scholars have begun
to focus on the process of interaction by the interpreter and clinician as co-constructed.
Recent proposals call for a bilingual communication that need not be based on
models that rely on interpreters to be conduits (interpreting all and only what is said) or
culture- brokers. Rather, a dynamic view of language interpretation allows for the
possibility that the models play a complementary role (Dysart-Gale 2005). The working
relationship between clinician and interpreter is ideally a partnership rooted in a mutual
understanding of both the communicative and interpretive dynamics that play out in
bilingual clinical consultations (Elderkin-Thompson, et al. 2001; Jacobs and Goldin 2002;
Dysart-Gale 2005). The final excerpts in this chapter, specifically the ways participants
work as a team, support this argument.
Besides these recommendations, the data imply the need for a “rule of
transparency,” which could be a way of making the interpretive process more visible
and explicit by encouraging participants, for example, to confer about the meaning and
substance of messages either before they are communicated, afterwards, or before and
after (Avery 2001; Elderkin-Thompson, et al. 2001; Abbe, et al. 2006).A short debriefing
session may be particularly useful in institutions where individual clinicians and
interpreters have had little or no prior opportunity to work together and get to know
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one another’s communicative styles, skill levels, and preferences. This interactive process has several potential benefits, including increasing interpretive accuracy and completeness, mobilizing patients to ask more questions and engage in discussions more actively, and bringing to the fore the clinician’s shared responsibility for effective communication and interpretation.
Lastly, training amongst participants is critically needed. A recent nationwide study reported that more than 50% of medical residents received no training regarding how to work with interpreters (Hsieh 2010). This data also suggests that training programs for promotoras, clinicians, and patients may help participants adapt their communication strategies and manage situations in which they suspect inaccuracies due to a lack of transparency.
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Chapter Seven: Conclusion
I. Summary
This dissertation coalesces several streams of inquiry from medical
anthropology, linguistic anthropology, and medical communications. At a fundamental
level, this research manifests an ethnographic exploration of a free clinic, in which participants focused on being culturally sensitive to the primary patient population of
Mexican immigrants. The research sought to answer broad questions about how clinicians, patients, and interpreters communicated within the framework of a linguistic or cultural difference between clinicians and patients. All interpreters in this study were of Mexican descent, as were the majority of the patients.
An ethnographic examination of the clinic in Chapter three provided data about the day-to-day functioning of the clinic, as well as the planned structure of the environment in order to facilitate the needs of the primary population. For example, a social worker met with all patients and made appointments for them at other medical facilities, if needed. Further, she helped patients apply for governmental assistance, such as S-CHIP (State Children’s Health Insurance Program).
Observation of the nursing community clinical program yielded data about how
nursing students were taught to be aware of the specific socio-cultural, economic, and
health issues of this patient population. A variety of activities, such as direct patient
care, providing health education classes at a local elementary school, community
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outreach activities, and afternoon debriefing meetings with the clinical preceptor,
helped students recognize the various factors that affect health and illness. Nursing
students often spoke about how much they learned from a hands-on pedagogy at the
clinic and during community outreach activities.
The micro-examination of discourse within the medical encounter in Chapter
four illustrated how clinicians, patients, and interpreters fulfilled their sociolinguistic roles of receiving and providing health care. Specifically, the case studies revealed the dynamics of a cross-cultural and bilingual clinical encounter; treatment decisions were made from the information shared within the encounter and negotiated between patient and clinician, sometimes including the interpreter; methods used to exercise power and control either prevented or encouraged information sharing.
Two case studies were representative of the fifteen other encounters in which patients shared information from their lifeworlds. In the first example, the clinician encouraged the patient’s narrative to unfold during the encounter. In the second, the patient spoke frequently about her lifeworld concerns, but the clinician primarily ignored her narratives. By supporting or ignoring the patient’s lifeworld, clinicians controlled the amount and type of information that patients shared. In cross-cultural encounters, these narratives, as linguistic forms for expressing experiences that lay outside of the biomedical space, arguably are especially important. Because illnesses are saturated with cultural, social, moral, and physical meanings, clinicians must
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understand the nature and impact of the illness on the patient and his or her family in order to become a partner in successful treatment (Kleinman 1988).
Chapter five was informed by the use of the theoretical tools and concepts from the case studies in Chapter four and applied them to the 30 encounters that were observed and recorded. Half of patients (n=15) discussed their lifeworld and/or explanatory models of illness with clinicians; in three of these encounters, clinicians utilized communication strategies to diminish patients’ lifeworld narratives. Twelve patients, then, successfully discussed lifeworld experiences with their clinicians, suggesting that clinicians, to a greater extent than previously reported, recognized the importance of including the patients’ experiences, feelings, and beliefs in their medical treatment (for example, Mishler 1984; Tuckett, et al. 1985; Ainsworth-Vaughn 1998).
As cultural competence is the current dominant model in biomedicine for the examination of treatment with immigrant and minority groups, this research explored the role of culture in a medical interaction and the strategies clinicians used to be culturally competent. Chapter five examined the type of information patients and clinicians provided to one another, and whether “cultural” narratives provided by patients would cause barriers to treatment, as assumed by cultural competence models.
In particular, previous anthropological and medical research indicated that differences between the clinician’s and the patient’s explanatory models could be a primary locale for such cultural barriers to emerge (Kleinman 1980; Chavez, et al.
1995;Browner, et al. 2003; Betancourt 2004; Fitzgerald, et al. 2005; Rosenberg, et al.
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2005; Hasnain-Wynia 2006; Haidet, et al. 2008). In analyzing patient narratives in the medical encounter during this research, two patients out of 30 voiced cultural health beliefs that differed from the clinician’s biomedical beliefs. In these two cases, cultural differences may have caused “barriers” to treatment as both patients and clinicians reported unsatisfactory medical encounters and their expectations of the encounter were not met.
However, most of the patients spoke with the clinician about joblessness and financial difficulties rather than stereotypical cultural health beliefs. During the post- encounter interviews, patients shared information from their explanatory models that were not shared during the medical encounter. Almost 1/3 of patients (n=9) discussed traditionally cultural health beliefs regarding causation (such as a hot-cold imbalance) and treatments of their illnesses (such as the use of cactus for diabetes). Most of these patients had “successful” medical encounters that were satisfactory and their expectations were met. Thus, although patients held cultural health beliefs that differed from biomedicine, they did not discuss these beliefs with the clinician, and the beliefs did not tend to cause barriers to treatment.
This data holds important information for cultural competence models, training programs, and practices through an understanding of the role of culture in biomedicine.
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II. Theoretical Contributions
First, it is important to recognize how this methodology differed from other studies of medical communication. Few studies of medical communication or cultural competence incorporate an ethnographic understanding of participant actions, as well as the broader social organization. Both are imperative for an understanding of linguistic and nonlinguistic aspects of communicative events. Without such knowledge, researchers run the risk of missing the cultural fabric and broader environment from which communicative actions are made meaningful. As Hymes eloquently stated, “…it is
not linguistics, but ethnography – not language, but communication – which must
provide the frame of reference within which the place of language in culture and society
is to be described” (1964: 3).
An additional problematic methodology within medical communications
research is that conclusions are drawn from an observation of an encounter at one point
in time, one visit between patient and clinician. Repeated observation of clinicians over
the course of 120 patient encounters in this study served to show how communication
strategies are nuanced, and co-created within the particularities of the medical
encounter. These observations thus provided understanding regarding how clinicians’
communicative actions were routine or unusual, given the specific patient
circumstances.
It seems important, in addition, to understand how this study informs, builds
upon, and extends past scholarship. It is best to begin this summary reflection with Eliot 261
Mishler’s articulation of the importance of patient lifeworld narratives in a medical
encounter. Mishler’s linguistic analysis in The Discourse of Medicine (1984), influenced
by the work of Foucault (1973), Kleinman (1978), Habermas (1984) and others,
portrayed biomedicine and its practitioners as agents whose medical gaze fully focuses
on the disease, objectifying and decontextualizing the patient and his or her everyday
experiences. Within this view, actions are driven by success, which is defined by
scientific and technical considerations, not moral ones. Language becomes the primary
mechanism for achieving success and the speaker may use deception or distorted
communication to accomplish it. Mishler (1984), following Habermas’ Theory of
Communicative Action (1984), hypothesized that in order to regain a balance between the voice of the lifeworld and the voice of biomedicine, actions need to be negotiated through a communicative process of mutual understanding, without the use of
coercion.
Mishler’s scholarship arguably helped usher in a much needed paradigm shift in
medicine, one more focused on the patient, such as patient-centered care or narrative-
based medicine. However, Mishler’s conclusions were quite judgmental of biomedicine
stating that current biomedical practice was inhumane and inefficient (1984: 192). An
inhumane individual is unfeeling and without compassion for suffering and Mishler
perhaps used such powerful language to make a strong point.
Drawing directly from Kleinman’s explanatory model theory (1978, 1980) and
narrative theory (Kleinman 1988; Fisher and Groce 1990; Hyden 1997; Garro and
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Mattingly 2000; Mattingly 2000), I sought to articulate how immigrant patients might utilize narratives to convey to the clinician important information from their lifeworld.
My analysis suggests that nurse practitioners, in particular, allowed for such subjectivities and were aware of the patient-as-person and the factors that influenced their health and illness, such as work, family, and structural barriers. Furthermore, clinicians in this sample used communication strategies, such as asking multiple open- ended questions, to inquire about patients’ lifeworld experiences. The patients in this sample shared information from their lifeworld to a greater extent than some research suggests (Mishler 1984; Tuckett, et al. 1985; Ainsworth-Vaughn 1998).
Still, a number of patients did not conform to previous models. They did not discuss information from their lifeworld with the clinician, even when the clinician initiated such a discussion. Patients who did not enter into this space with the clinician may have felt an intrusion into their privacy. Foucauldian notions of power and control may shed light into these actions; an expansion of biomedicine into the patient’s everyday world signals further surveillance of biomedicine into the social and cultural body (Foucault 1973, 1975). As health and health care become commodities in the biomedical system, doctors serve as the providers and patients are the consumers.
Biomedicine, then, is not just any bureaucracy and profession, “…it is a leading institution of industrialized society’s management of social reality” (Kleinman 1995: 38).
Thus, the six patients who did not engage with the clinician in lifeworld discourse may have felt that discussing lifeworld discourse was unnecessary and inappropriate.
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While I can infer the importance of lifeworld narratives, this research cannot link the presence or absence of patient lifeworld narratives to patient outcomes, like patient compliance or satisfaction. The majority of patients reported satisfaction with the clinic and their treatment, regardless of happened during the encounter. Rao, et al. (2000) reported that patients were more satisfied when doctors asked about their expectations for the visit and for treatment and incorporated expectations in their clinical actions. In a different study, researchers discovered that patient-centered care was associated with improved health status (less discomfort, less concern, and better mental health) and increased efficiency of care (fewer diagnostic tests and referrals) (Stewart, et al. 2000).
This research suggests that patients who talked about their lifeworlds used those narratives as a mechanism to discuss their treatment preferences or an agenda item.
Narratives often functioned as a way to not only bring the human element to the encounter, a patient’s feelings and experiences, but also as a communication strategy that allowed patients to voice their concerns or preferences in a linguistically appropriate way. In some instances, talking about lifeworld concerns helped the patient get assistance from clinicians for their problem. For example, the female patient who came in because her heart was racing finally discussed with the nursing student the fact that her husband lost his job after his heart attack and that they were having trouble obtaining follow up care and medication. The nursing student and clinic medical director treated her husband and made him a follow up appointment at the county hospital.
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Finally, this research expands our knowledge of the role of culture and cultural difference in medical encounters. As discussed above, the fact that patients had different health beliefs from clinicians did not automatically cause barriers to treatment.
Barriers were created when patient agendas (to secure an antibiotic, for example), or reasons for being at the clinic, were different from the clinician’s treatment decision.
For example, in the two encounters that represented a barrier to healthcare, the female patients had different health beliefs that directly influenced their treatment preferences for their respective infections. Interestingly, in these two cases, the clinicians elicited the patients’ explanatory model, but did not know how to utilize the cultural health information they received. They inquired about health beliefs, but were not sure how to incorporate that information into their biomedical beliefs in order to negotiate a treatment plan. Instead, the clinicians focused on trying to educate the patients in order to replace the patients’ cultural health beliefs with biomedical ones.
This strategy was not successful in either situation.
What seemed to be missing from both encounters was a true conversation and balanced negotiation about health beliefs with a view that the patients’ views and the clinicians’ views could both be valid. Instead of trying to educate in these situations, the data suggests it may be more effective for clinicians and patients to discuss a common view of the illness and a treatment plan that is possible and practical, given the specific circumstances of patients’ environments.
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Consequently, this research also served to address the understanding of
“culture” in cultural competence. The next section will build upon previous
anthropological critiques to hypothesize a new model.
III. Redefining Cultural Competence
The language barrier is a major obstacle to medical treatment in bilingual
medical encounters (Elderkin-Thompson, et al. 2001; Flores, et al. 2003; Simon, et al.
2004; Dysart-Gale 2005). Attention to the role of language and the provision of quality, trained medical interpreters must be upheld and maintained. This research found that without proper training, interpreters may provide significant errors that have the potential to cause medical harm. Responding to clinician concerns and observational data, it was suggested that strategies that increased transparency would make the interpretive process more visible and increase trust amongst participants. Additionally, trust and accuracy improved when clinicians and interpreters worked as a team, both bearing responsibility for clear communication.
However important the role of language, the use and role of the patient’s
“culture” in cultural competence, clearly, is where anthropological insight is the most
needed. The notion that it is something inherent within a patient’s culture, and not the
culture of biomedicine or other factors, which creates a barrier to care, is problematic.
As noted in prior anthropological and communications research, miscommunication
exists even in medical encounters where the patient and clinician share the same 266
cultural and linguistic background (Korsch, et al. 1968; Shuy 1983; West and Frankel
1991; Good 1994; Hahn 1995). This is because the intensive training clinicians receive creates a linguistic and cultural gulf between patients and clinicians (Good 1994; Sobo
2009). To quote anthropologist Robert Hahn, “All medicine is cross-cultural” (1995:
265, emphasis in original).
Cultural competence necessitates that a different set of communicative and behavioral strategies be used when treating minority or immigrant patients. Because of the difficulties in taking an anthropologically sophisticated view of culture, cultural competence training often uses a “cookbook” approach of listing stereotypical cultural beliefs or behaviors for clinicians’ review. Rather than another call for medicine to make
“culture count,” this research points to a wider set of competencies than those that solely focus on cultural difference. The competence needed is thus one that helps clinicians translate biomedicine to a host of differing backgrounds, including cultures that are similar to their own, a kind of communicative competence.
Moreover, expansive or holistic cultural competence models (reviewed in
Chapter three, such as the Purnell model (2000), do not help clinicians understand how to incorporate factors that may affect patient’s health and illness. Therefore, some medical anthropologists argue for a model that emphasizes functionality. Elisa Sobo proposes a “functional biomedical acculturation” model that encourages patients to possess the skills to be “at least minimally or functionally acculturated to the world of
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their health care system in a way that allows them to function within it and achieve
desired ends” (2009: 119).
This approach moves away from a focus on the shoulders of ethnically diverse
patients whose language and culture causes the barrier, to a focus on the gap between
the two cultures and in “the health care system’s own ethnocentrism” (Sobo 2009: 120).
Such a model would address the challenges that patient participants in this research possessed, i.e., a lack of skills and knowledge necessary to apply for the county
“insurance” program for indigent patients, or an inability to apply for a pharmaceutical
Patient Assistance Program for free medicine. Shifting the focus away from the patient and his or her culture also changes the implicit assumption in cultural competence that biomedicine and American culture are the standard, normal cultures.
Thus, as cultural competence focuses on the patient’s cultural health beliefs that are different from the clinician’s beliefs, it implicitly blames barriers to treatment on these cultural differences. A functional model identifies the barrier outside of these stereotypical cultural differences to the health care system itself, and recommends that patients have knowledge of how to navigate the system in order to successfully receive treatment. Many patients in my sample had difficulties in navigating the health care system.
This kind of model would also directly address the use of stereotypical health
beliefs by clinicians when treating immigrant patients, for example, the nursing student
at the People’s Clinic who reported that she no longer touched or complimented
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Mexican babies for fear of giving them mal de ojo (the evil eye). Sobo’s example is also
informative: “Clinicians treating a girl from Somalia for a toe problem asked about
genital cutting, as if that had anything to do with the problem at hand; they did so
because they had been “educated” about Somali culture” (2009: 121).
This is not to say that culture does not matter. On the contrary, culture is an intrinsic part of who we are and it cannot be separated out as a set of variables to be discovered and altered. Instead of searching for cultural differences in patients, however, clinicians should invite all patients, regardless of background, to discuss their present understandings of their illness and health concerns.
In this way, clinical encounters could represent a two-fold process of treatment and learning. I suggest openness on the part of clinicians as well as a readiness to seek clarification when patients present unfamiliar experiences or symptoms. When differences in health beliefs arise, clinicians should be extra vigilant to have a true dialogue with patients versus “educating” them on “proper” health beliefs.
IV. Study Limitations and Directions for Future Research
The research reported in this dissertation provides ethnographic data about how
patients and clinicians communicate in a bilingual, cross-cultural medical encounter. A
limitation of this study is that my observation of one medical encounter represents one
point in time amongst presumably multiple visits between patients and clinicians.
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Therefore, a longitudinal study with the same patient and clinician will yield a more rich
understanding of the role of patient lifeworlds or health beliefs.
Second, my research participants represented several sub-cultures and my
findings may be unique to these groups. For example, the clinicians in my sample were
nurse practitioners, whose training is more holistic than medical doctors. Specifically,
nurse practitioners have been found to spend more time with patients, and spend more
time discussing treatment options, when compared to medical doctors (Seale, et al.
2006). Research is needed to compare my findings amongst other health professionals such as emergency room doctors or specialists.
Further, the clinicians were volunteers and often stated one reason they
volunteered at the clinic was that they could treat patients how they wanted to. While
supervised, clinicians were not governed by constraints that other clinicians may
experience operating in a managed care environment. The amount of time spent with
patients was not regulated, although it was clear that patients were turned away from
the clinic every day. Thus, clinicians were aware that the more time they spent with
patients meant that other people did not receive the needed treatment.
More broadly, with respect to future theoretical directions, I want to expand
upon this research to examine the extent to which the explanatory model concept is
useful in medical encounters as a device to help clinicians and patients negotiate
treatment. As other researchers point out, explanatory models are fluid, cognitive
constructs influenced by culture, society, and other factors (Lazarus 1998; Larsen 2004).
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Explanatory models are spoken within specific stories or discourses narrated by
individuals in one time and place. Larsen found that “the actual explanatory model used
by an individual is linked to the situatedness of the narrative event” (2004: 450). Thus, encouraging a clinician to elicit a patient’s explanatory model, which can be a time consuming process, may become an end in itself if it is not coupled with the knowledge of how to incorporate fully the information into a meaningful discourse with the patient.
More research is needed about how clinicians may use the explanatory model concept
to locate patients’ changing reflections and experiences throughout the continuous
process of treatment.
A second future strand of research in this immigrant population is to study how patterns of circular migration affect health care decisions and treatment. Two patients I interviewed indicated they live both in Texas and in Mexico and El Salvador. Both patients had primary clinicians in each country and both patients reported consistency in their pharmaceutical treatment for their chronic diseases.
An additional direction for future research involves how to translate a more anthropologically-informed conceptualization culture and patient-centered care to practicing clinicians. As previous medical anthropological research has demonstrated, it is difficult to build bridges and collaborate with medical disciplines (Kleinman and Good
1985; Hopper 1991). In the last thirty years, funding cuts and managed care restrictions have had negative consequences on clinical training and have left health, social and rehabilitation services, and case management in a disconnected and compartmentalized
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system (Lefley 2001). The current failure to apply anthropological knowledge is part of a more general failure to incorporate information at the time of training from the social and behavioral sciences to the clinical domain.
In order to continue a dialogue, anthropologists must be overtly visible and clear about the relevance of their work to other disciplines (Rylko-Bauer 1989; Kleinman
2001). To this end, I anticipate working with the People’s Clinic to create a training program for the promotoras and nursing students on how to work as a team to ensure accurate interpretations. In the future, more research is needed about possible interventions for patients and clinicians alike to help them clearly articulate their goals in order for agendas and expectations to be met. Training for clinicians on how to translate biomedicine to the lay individual, regardless of the patient’s cultural background, also emerged as a necessity for medical success. Modules on communicative competence or “functional biomedical acculturation” (Sobo 2009) would be the next logical step.
Research is also needed with other types of populations as points of comparison.
For example, a second research population emerged at the People’s Clinic during the latter stages of my research, namely Karen refugees from Burma. My preliminary observations indicated that these refugees had far greater difficulty than the Mexican immigrants in understanding the entirety of biomedicine, including biomedicine’s culture, language, etiological models, and structural systems. This was not only because the cultural differences to American culture were greater than the Mexican immigrant
272
patients, but also because of the political, economic, and personal suffering the Karen
refugees have endured under a military dictatorship since 1984. Research into this
population is clearly needed.
At a national level, the recent change in health care policy by the current federal
government can only create more opportunities for anthropologists to contribute to
policy change. The Joint Commission, the agency that maintains hospital accreditation,
is poised to develop proposed accreditation requirements for hospitals to advance
effective communication, cultural competence, and patient-centered care within the
year. This dissertation research speaks directly to such proposed requirements, making
anthropologists invaluable to hospitals and clinics as they formalize and implement
individual plans. Anthropologists, whose focus is holistic, can also incorporate political
and economic determinants of society into studies of health and medicine (Lazarus
1988; Santiago-Irizzary 1996;Hirsch 2003; Hunt 2005; Shaw 2005). Perhaps the most
important and compelling reason to continue this field of study is the potential it brings for designing interventions that would reduce health inequality and improve health care services, making services more accessible to a diverse range of people while providing care for all people, regardless of status. Research remains crucial to achieve these changes.
273
Appendix I: Patient and Clinician Interviews and Patient Survey
Clinician Interview
Volunteering
1. How long have you been a volunteer at the clinic?
2. How did you get into volunteering here?
3. What motivates you to volunteer week after week?
Patient Population
4. How would you define the patient population at the clinic?
a. Is this a different population than you normally treat?
5. What is it like to treat Spanish-speaking patients or patients from other countries?
6. Do you consider there to be unique aspects of providing care to this population? What are they?
7. What do you consider to be success with respect to patient care in this population?
8. From your experience, what makes a patient a “good” patient?
9. Tell me about a time when you were treating a patient at the clinic that was really rewarding.
10. What about a time that was quite frustrating?
Communication
11. I’m interested in the interpreting process. What do you think of the promotoras?
12. How did they help your communication?
13. What do you think is the role of the promotoras?
14. What are some differences in an interpreted medical conversation? How is communication different when using an interpreter? 274
15. What are some strategies you’ve used in these situations?
16. I’d like to talk now about culture. Does understanding the patient’s culture help you communicate or understand better?
17. Have you ever had training in cultural competence?
18. My final question is whether you have additional overall comments. I would like my study to help other clinicians learn how to communicate better with patients from different cultures or language backgrounds.
275
Patient Interview
Explanatory Model
1. Can you tell me why you came to the clinic today? (Also probe for the name of the illness)
2. When did you first learn you had X?
3. Was that here at the People’s Clinic?
4. What did you think when you heard you had X?
5. What were your symptoms?
6. Are you having symptoms today of X?
7. How did you get X? What do you think causes X?
8. What other treatments have you tried to help with X?
Patient Current Agenda
9. What did you want the doctor or nurse to do for this illness (today)?
10. (Before you came in) Did you want specific medicine or treatments for this illness?
Current Treatments
11. What medicine are you taking?
12. How long have you been taking that medicine?
13. Do you feel it is working for you?
*If patient has a new diagnosis:
14. Did the nurse/doctor tell you what is wrong with you? What did they say?
276
15. What do you think about the explanation of the illness?
16. Did the nurse/doctor prescribe any treatment for your illness?
17. What do you think about the treatment?
Communication
18. Do you understand everything the nurse or doctor said today?
19. Are there ever times at this clinic or other places that you don’t understand what was said? What happened during those times?
20. Did you have any questions or things you wanted to discuss today with the nurse or doctor but didn’t?
21. What can doctors and nurses do to communicate better with their patients? Especially patients from different countries?
Patient is from ______
Has been a patient since ______
277
Patient Survey
This survey is to help me understand how patients and doctors from different cultures communicate, especially when they do not speak the same language. Please answer all questions. Your answers are confidential and will not be directly shared with the People’s Clinic. Thank you for participating!
1. Why did you come to the clinic today?
2. Please describe your symptoms or illness/illnesses.
3. What do you think is wrong with you?
4. Before you came in to the clinic today, what other treatments have you used for this illness?
*Please answer the following questions by checking the right box or boxes.
5. Often people come to the doctor with expectations. What were you wanting or expecting from the doctor today? Check all that apply.
Advice about symptoms Diagnosis
Information about my illness Referral to a specialist
Test (like sugar or blood pressure) Check-up
Medicine, pills Other, please explain:
Medicine, cream ______
Medicine, other ______
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6. Did the doctor or nurse do what you hoped?
Yes
No
If not, what other things did you want them to do?
7. What treatment did the doctor or nurse prescribe today?
Medicine Rest
Exercise Other, please explain:
Eating better ______
Loosing weight ______
8. Did the nurse or doctor prescribe or refill medicine(s) today?
Yes
No
I don’t know
If yes, what is the name of the medicine? How long have you been taking the medicine?
1st medicine______months _____ years
2nd medicine ______months _____ years
3rd medicine ______months _____ years
4th medicine ______months _____ years
279
9. Please think about your visit to the doctor today. Did your doctor or nurse fully explain:
Yes No
your illness or diagnosis
your treatment options
how to take your medicine or prescribed therapy
10. Did you have any questions or things you wanted to discuss today with the nurse or doctor but didn’t?
Yes
No
If yes, what kept you from doing that?
What did you want to discuss or ask?
11. What could doctors or nurses do to improve their communication with patients?
12. Please answer true or false:
I would recommend the clinic to a friend or family member………………………………………………….. True False
The clinic interpreters help me communicate…..……. True False
I was satisfied with my doctor visit today…….………… True False
I trust the doctors and volunteers at the clinic……….. True False
280
13. How long have you been a patient at the People’s clinic?
1-6 months
6-12 months
1 year
2 years
3 years
4 years
5 or more years
14. Are you:
Female
Male
15. Where were you born?
Mexico Guatemala Honduras
United States Puerto Rico South America
El Salvador Panama Other country
281
Appendix II: Transcription Notations
The transcription notation is based on Gail Jefferson’s “Transcript Notation,” a standard methodology in conversation analysis (Atkinson and Heritage1984).
Overlapping Utterances When utterances do not start simultaneously, the point at which a new utterance overlaps or interrupts an ongoing utterance is marked by a single left bracket.
Joe: It’s freezing in here. Where is your jacket? [ Sue: It sure is.
Contiguous Utterances When there is no silence between two speaker’s utterances and the second one is immediately latched onto the first without overlapping, the utterances are marked with equal signs:
Joe: Can you please turn the heat on?= Sue: =Yes that’s just what I was doing.
Equal signs are also used to link different parts of a single speaker’s utterance when that utterance has been interrupted by another speaker, to accommodate the transcript design:
Sue: When do you think it’ll warm up around here= [ Joe: I don’t know Sue: =because my car doesn’t have heat.
Intervals When there are intervals between speech either between or within utterances, they are timed by 1 second and marked (.) within parentheses; pauses more than 5 seconds are marked by the number of second (6) within parentheses.
Sue: I just can’t imagine (..) I’ve never seen anything like it before.
282
Intonation Punctuation is used to capture characteristics of speech delivery. A colon indicates an extension of the sound or syllable it follows:
Joe: Why ca:n’t you do that?
A ?mark indicates a rising inflection. A .indicates a stopping fall in tone. CAPITAL letters indicate speech that is louder than the surrounding talk. Italicized letters indicate speech that is said with emphasis.
283
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