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Insights from the shadows: exploring deservingness of care in the emergency department and language as a social determinant of health
  1. Seiichi Villalona1,2
  1. 1 Rutgers Robert Wood Johnson Medical School, Piscataway, New Jersey, USA
  2. 2 Anthropology, University of South Florida College of Arts and Sciences, Tampa, Florida, USA
  1. Correspondence to Mr Seiichi Villalona, Rutgers Robert Wood Johnson Medical School, Piscataway, NJ 08901, USA; svillalona{at}mail.usf.edu

Abstract

This study addresses the existing gap in literature that ethnographically examines the experiences of Spanish-speaking patients with limited English proficiency in clinical spaces. All of the participants in this study presented to the emergency department (ED) for evaluation of non-urgent health conditions. Patient shadowing was employed to explore the challenges that this population face in unique clinical settings like the ED. This relatively new methodology facilitates obtaining nuanced understandings of clinical contexts under study in ways that quantitative approaches and survey research do not. Drawing from the field of medical anthropology and approach of narrative medicine, the collected data are presented through the use of clinical ethnographic vignettes and thick description. The conceptual framework of health-related deservingness guided the analysis undertaken in this study. Structural stigma was used as a complementary framework in analysing the emergent themes in the data collected. The results and analysis from this study were used to develop an argument for the consideration of language as a distinct social determinant of health.

  • emergency medicine
  • medical anthropology
  • medical humanities

Data availability statement

Data sharing not applicable as no datasets were generated and/or analysed for this study.

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'Pues sería chido poder entender lo que están diciendo, pero uno tiene que agradecer cualquier tipo de atención medica que nos den’.1 These were the words of Marcos (pseudonym), a 31-year-old Mexican man and farmworker from the strawberry fields of Plant City, Florida. When I met Marcos, he was a patient presenting to the emergency department (ED) for a work-related injury to his knee that had progressively worsened after 3 weeks of not seeking medical care. His present condition was a collective product of several factors. First, Marcos was undocumented and uninsured, which limited the clinical spaces where he could go to have his knee medically evaluated. Second, his financial situation forced him to work 6 days a week in order to pay for his portion of the monthly rent and living expenses in the apartment he shared with his two cousins; this exacerbated the injury and gave it no time to heal. Third, Marcos had no access to a reliable form of transportation, which also contributed to not getting his knee evaluated in time. While these factors synchronously exacerbated his condition, Marcos also faced frustrations with being unable to fully communicate with the medical staff overseeing his care in the ED. These frustrations stemmed from difficulties describing the events that led to his sustained injury, how his pain reached the point of not being able to walk properly, as well as what measures he took as an outpatient to treat his condition. Although these details may appear seemingly benign in a clinical setting structured to respond to time-sensitive health conditions, the ability to communicate effectively with medical staff and to comprehend their explanations or instructions on follow-up is important for the continuity of care, as well as the overall long-term health outcomes for patients who do not speak English as a first language (Catherine Gouge, 2018; Leah S Karliner et al., 2010; Chandrika Divi et al., 2007; Ava John-Baptiste et al., 2004; Caraway L Timmins, 2002; K P Derose and D W Baker, 2000).

I asked Marcos to describe his experiences communicating with the medical staff during his stay in the ED, to which he responded: ‘Of course you get frustrated. But it’s not their fault that they do not understand us, we should understand them. I know they do the best they can, although it’s really hard for me to understand them. I can’t complain. They do their best to help, even if they can’t understand me. It’s us that have to do a better job at understanding them by learning English’. This complex sense of frustration, empathy and self-blame encapsulated a situation that in many aspects was out of Marcos’ direct control. I soon came to realise that Marcos’ story and views about receiving medical attention were not a special case in isolation but actually a fairly common experience among patients who do not speak English as a first language and have limited English proficiency (LEP) when they seek non-urgent healthcare services in emergency medical settings.

Introduction

Over the last two decades, the Latinx population has led the demographic growth in the USA, representing half of the total population growth nationwide (Jens M Krogstad and Mark H Lopez, 2014). Demographic studies consistently suggest that Spanish is the most spoken non-English language and is the primary language used to communicate among foreign-born immigrants and individuals older than 30 years of age (Ana Gonzalez-Barrera and Mark H Lopez, 2013). Language is an essential tool during times of illness because it dictates communication and interactions between patients and medical providers, the degrees of mutual understandings between both parties and how the management of medical conditions is negotiated. Language barriers between medical professionals and patients present a formidable challenge for healthcare institutions in attempting to meet the needs of vulnerable populations, which often are predominantly composed of patients with LEP.

Despite impacting most parts of the US healthcare system, the ED is one clinical setting where this issue is significantly pronounced. Distinct from the other clinical settings within the US healthcare system, EDs constitute a physical space where time-sensitive health conditions are treated and managed with limited to no time for preparation, often with life or death consequences. Spanish-speaking individuals with LEP comprise a large proportion of the patient populations that are seen in EDs (Elizabeth Sandoval et al., 2010; Glenn Flores and Emmanuel Ngui, 2006), which sets the stage for stressful, emotionally heightened and possibly contentious interactions between overworked ED staff and non-English-speaking patients. The stressful nature of the ED setting is amplified when taking into account the national issue of hospital overcrowding, which is partially attributed to non-urgent ED use (Lindsay Allen and Janet Cummings, 2016) and accounts for approximately one-third of the 116.8 million ED visits completed annually (Lori Uscher-Pines et al., 2013; Richard Niska, Farida Bhuiya, and Jianmin Xu, 2010).

Some research has addressed the detrimental effects of ED overcrowding and non-urgent use on increased costs, pain and suffering, longer wait times and missed opportunities to connect patients needing follow-up care with primary care providers in outpatient and community settings (Lindsay Allen and Janet Cummings, 2016; Lori Uscher-Pines et al., 2013; Robin M Weinick, Rachel M Burns, and Ateev Mehrotra, 2010; G Warden et al., 2006; R W Derlet and J R Richards, 2000). While there is considerable dialogue between researchers, healthcare practitioners and policymakers regarding the burden of overcrowding and frequencies of non-urgent ED use among Latinx populations (Jennifer Villani and Karoline Mortensen, 2013; Jennifer Villani and Karoline Mortensen, 2014; Leo R Chavez, 2012; Eduardo LaCalle and Elaine Rabin, 2010; Rick Hong, Brigitte M Baumann, and Edwin D Boudreaux, 2007; P J Cunningham et al., 1995), few studies have ethnographically examined the patient perspective when these populations actually seek care in EDs. Even fewer have conducted research in a clinical setting, relying instead on retrospective interviews.

This qualitative study sought to address the existent gap in scholarly work through employing ethnographic methods in understanding the challenges and experiences of Spanish-speaking patients with LEP in seeking ED care that is considered non-urgent. This study employed the novel methodology of patient shadowing (Jason W Wilson, Roberta D Baer, and Seiichi Villalona, 2019), which draws from the anthropological approach of participant observation (Kathleen M DeWalt and Billie R DeWalt, 2011). Participant observation is a key methodological approach used in ethnographic studies where the researcher is immersed in the socially dynamic contexts they are specifically examining (Kathleen M DeWalt and Billie R DeWalt, 2011). This method has been widely used in ethnographic studies within the fields of cultural and medical anthropology, where researchers attempt to understand the perspectives of individuals of a particular cultural group. Patient shadowing extends from the traditions of participant observation by viewing biomedicine through a cultural lens with subgroups (based on medical specialties) that are uniquely experienced by patients when seeking healthcare services. The experiences of patients vary drastically, depending on the demographic characteristics and particular vulnerabilities that different groups may possess. Patient shadowing therefore provides a useful approach in ethnographically unpacking the complexities of seeking healthcare services among vulnerable patient populations, such as those with LEP. The results are presented in the form of ethnographic vignettes, simultaneously drawing from the anthropological tradition of using thick description (Clifford Geertz, 1973), as well as the approach of narrative medicine (Rita Charon, 2008; Rita Charon and Martha Montello, 2002) to delineate the situational contexts of the patient experience. Health-related deservingness (Sarah S Willen, 2012a; Sarah S Willen, 2012b) served as the guiding theoretical framework in analysing the experiences of this patient population. The analytical tools of hermeneutic phenomenology were used to thematically interpret the data collected throughout each patient shadowing encounter (Mohammed Ibrahim Alhojailan, 2012). This conceptual and analytical approach is integrated through exploring the role of language as a distinct social determinant of health (SDH).

Guiding theoretical framework

Health-related deservingness is the conceptual examination of how legal and political mandates entitle, qualify or deem specific groups worthy (or not) of receiving certain rights pertaining to health and access to them. Research on health-related deservingness has dissected how moral economies are constructed and understood in ways that include certain populations while at the same time excluding others. This work has primarily explored welfare through a top-down approach in analysing perspectives of policymakers and the general public (Sarah S Willen, 2012b). The work of Sarah S Willen (2012a) on health-related deservingness with unauthorised migrants refocuses the analytical lens and calls for a bottom-up approach in examining how those whose deservingness is being assessed perceive, understand and make sense of their own worth, entitlement and right to particular health and medical resources. Willen’s scholarly work unpacks and draws distinctions between rights and deservingness. The former is often argued from juridical perspectives that apply universal equality under the law, while the latter is expressed through moral registers that are context-dependent and situationally reckoned (Sarah S Willen and Jennifer Cook, 2016). While most of the work pertaining to health-related deservingness has explored undocumented/unlawfully present (im)migrants, this anthropological concept can be useful in studying how non-English-speaking patients perceive the care they receive when they seek healthcare services in an ED (a clinical space where all patients are guaranteed to be seen). Although studies have begun elucidating the ways undocumented/unlawfully present (im)migrant patients can suffer from treatment delays, their associated healthcare complications and, ultimately, exacerbations of chronic health conditions (Heide Castañeda, 2017; Heide Castañeda and Milena Andrea Melo, 2014; Jessica M Mulligan and Heide Castañeda, 2017; Milena Melo and K Jill Fleuriet, 2016), this study additionally aimed to explore how language discordancy impacts these same phenomena and influence the patient experience of receiving care in emergency medical settings. This study attempts to answer Sarah Willen’s (2012) call for examinations of how deservingness is reasoned by those excluded, which in this case is a group of patients whose dominant language creates barriers during the clinical encounter in emergency care settings.

Methodology

This study was conducted at a level 1 trauma centre in West Central Florida. Patients were eligible to participate in the study if they were at least 18 years of age, identified Spanish as their preferred language of communication and were triaged as a non-urgent ED visit. The Emergency Severity Index (ESI) assigned by triage personnel was used to identify patients presenting to the ED for evaluation of a non-urgent condition, which was defined as clinical encounters that were not time-sensitive and could have been safely delayed for evaluation in outpatient settings (Lindsay Allen and Janet Cummings, 2016; Richard Niska, Farida Bhuiya, and Jianmin Xu, 2010). Patients were excluded if they presented to the ED under circumstances that would impede obtaining informed consent, such as being under the influence of alcohol or substances (pharmacological or illicit), having medical histories of psychiatric or mental health conditions, or if the patient was under the custody of law enforcement officials.

Verbal informed consent was obtained as a way of establishing rapport with eligible participants and minimising interference with the workflow of the ED personnel. Studies have previously reported on the issues of formalised informed consent procedures, where written consent forms fostered suspicion and scepticism of why the study is being conducted for interactions that were perceived to be more informal (Rosalie Metro, 2014). Formal informed consent procedures have also presented challenges in translating technical terms that may be difficult to cross-culturally understand in different languages (Rosalie Metro, 2014). Questions pertaining to legal status or insurance coverage were not included in order to minimise the power differentials with the participating patients. The Spanish verbal consent form was thoroughly reviewed with eligible patients, and a physical copy was provided to each individual who consented. This document outlined the purposes of the study and provided contact information of the principal investigator should they have any questions.

Patient shadowing was the primary data collection method employed in this study through 40+ hours of encounters with 10 participants. As previously mentioned, this method draws from the anthropological approach of active participant observation, which situates the researcher as an engaged actor in the particular contexts being studied (Jeffrey C. Johnson, Christine Avenarius, and Jack Weatherford, 2006; Barbara B Kawulich, 2005) while also fostering the rapport-building with the participants in these settings (David M Hoffman and Andrew Gardner, 2006; Jeffrey C. Johnson, Christine Avenarius, and Jack Weatherford, 2006). During patient shadowing, a researcher accompanies a consenting participant during different time periods throughout their stay in a clinical setting (Elisa Giulia Liberati, 2017). This methodological approach lends itself to ethnographically capturing time–space dynamics (Barbara Czarniawska-Joerges, 2007) unique to clinical settings like the ED that could not be possible through the use of traditional static observations (Elisa Giulia Liberati, 2017). The use of patient shadowing facilitated the researcher–participant relationship when considering that both parties were closely involved in the generation of the qualitative data being collected, as well as the interpretation of the contexts under study. While the researcher has general areas of interest to explore, participants who consented predominantly guided the data collected through their own open-ended discussions of their experiences in real time. This allowed for the prioritisation of the patient’s experience in articulating their perspectives.

Patient shadowing provides the researcher a distinct vantage point in studying how participants experience receiving healthcare services in clinical settings, where a more visceral understanding can be appreciated (Jason W Wilson, Roberta D Baer, and Seiichi Villalona, 2019). This perspective is vital in ethnographic studies as it elucidates aspects of the clinical encounter that would otherwise be overlooked through the use of quantitative approaches, such as survey research (Elisa Giulia Liberati, 2017). As a methodological approach, patient shadowing inherently pushes the boundaries of ethnography and humanities studies through uniquely situating the researcher in clinical settings, such that the perspectives of patients are experienced, understood and closely examined in ways that other methods would not allow.

Among the few studies that have specifically used patient shadowing, a majority have predominantly focused on the methodology’s utility to understanding organisational cultures, clinical processes and operational flow of patient care (Arianna F Yanes et al., 2016; Anthony Digioia, 2015; Anthony DiGioia et al., 2010; M Dixon-Woods, 2003). These studies have primarily emphasised the perspectives of the healthcare institutions from a quality and safety standpoint, with very few studies presenting the vantage points of the patients actually receiving care. Jason W Wilson, Roberta D Baer, and Seiichi Villalona (2019) discuss patient shadowing as a useful method in identifying communication gaps between ED physicians and English-speaking patients, where misunderstandings of medical jargon, ED procedures and follow-up care instructions were some of the primary concerns of patients.

Field notes were the data collection technique used in this study, where the jotting and logging practices (H Russell Bernard, 2011) were used to document behaviours, language and interactions. These techniques facilitated capturing events as they occurred in situ (Jean J Schensul and Margaret D LeCompte, 2012). Field notes were taken either through physical writing or electronically on a research tablet, depending on where observations were being made in the ED. Physical field notes appeared not to make patients uncomfortable while I was shadowing them, whereas electronic note taking appeared to impact the building of rapport. This approach to data collection was iterative through continual clarification on the statements and experiences shared, in order to prioritise the perspectives of the study participants.

Analytical approach

Clinical ethnographic vignettes from the collected field notes were used to elucidate some of the recurrent themes that emerged throughout patient shadowing encounters in the ED. This analytical technique draws from the approach of narrative medicine (Rita Charon, 2008; Rita Charon and Martha Montello, 2002) and the anthropological tradition of using thick description (Clifford Geertz, 1973) to delineate an ethnographic snapshot of the experiences of Spanish-speaking patients with LEP. The analytical tools of hermeneutic phenomenology were used to thematically interpret the data collected throughout each patient shadowing encounter (Alhojailan 2012). This analytical approach is aimed at examining rich textual descriptions of the perceptions and lived experiences of participants as a way of understanding particular phenomena under study (D Smith, 1997). Both narrative medicine and thick description were used in presenting the qualitative data in attempts to articulate the social justice dimensions that are often overlooked and unseen in the experiences of this vulnerable patient population when seeking healthcare services. This is to say that narrative medicine and thick description are not in and of themselves the limits of the study’s findings, but rather qualitative media used to bring light to the unique challenges experienced by Spanish-speaking patients with LEP.

The use of patient shadowing requires self-reflexivity and awareness of the researcher’s own positionality, as a way of recognising the influences of one’s own views, beliefs and social role on the contexts under study (Elisa Giulia Liberati, 2017; Kathleen M DeWalt and Billie R DeWalt, 2011; James Clifford and George E Marcus, 1986). Self-reflexivity is crucial to the use of this method because of the delicate balance between excessive proximity to the consenting patient that can be perceived as intrusive and being a distant observer that is completely unengaged in attempts to be objective in socially fluid and dynamic scenarios (Jay M Baruch, 2013; Johanna Shapiro, Deborah Kasman, and Audrey Shafer, 2006; M Dixon-Woods, 2003).

The clinical ethnographic vignettes are additionally presented in a way that attempts to maintain narrative humility, where encounters are meant to be interpreted through the perspectives of the patients (Sayantani DasGupta, 2008). This is to emphasise that patient encounters are more than ‘just stories’ or chief complaints and recognise that the interpretation of these narratives can have the unintended consequence of delegitimising the patient’s voice if consideration is not taken on how these interactions are presented (V M Chau et al., 2017; Johanna Shapiro, 2011). With this in mind, I attempt to consolidate the use of narrative humility with my own reflections and interpretations of patient encounters throughout each of the presented vignettes. As previously discussed, particular emphasis was placed in examining how health-related deservingness emerged throughout the patient encounters. The study design, methodology, analytical approach and presentation of findings all simultaneously considered the sociocultural factors unique to both patients and the clinical setting under study.

Clinical ethnographic vignettes

Vignette 1: ‘Fíjate mijo, que soy diabética y ni siquiera eso le pude decir’.2

I went to do my first set of rounds in the medical team and nursing staff areas to identify any predominantly Spanish-speaking patients currently in the emergency department (ED). “Try room 2, she’s been here for some time. We’re still waiting on some of her labs”, recommended one of the ED residents. I made my way over to the patient’s room, knocked on the door, introduced myself, and explained why I was asking for permission to accompany patients during some parts of their stay. After going over the informed consent form, I began asking the patient some questions about her visit and her experience in the ED. “Well look at these. They’re all over my arms and legs.” Here Yamaira (pseudonym), a 32-year-old Cuban woman was showing me some irritated red spots she said began a few days prior and were beginning to concern her since they would not go away. “I tried some creams and Vaseline at home to see if that would help. After two days of it not really getting any better, I went to the clinic early this morning once I dropped off my two girls at school. I was hoping to get some answers there, but they just told me to come here to get seen by the doctors. It’s 4PM, I’ve been here since 10AM, and I have the slightest idea what type of tests they are doing. I hope someone comes to finally tell me what this is and what I can do or take, so I can go home.”

I followed up by asking what her thoughts were on the possible causes of the symptoms she was experiencing, to which she responded: “God knows. At first, I thought it was because of some new bed covers I recently got. After it seemed to get worse, I began thinking it was a type of parasite you commonly see in Cuba that causes you to have a similar type of skin reaction. I especially thought this because I was just there about a month ago visiting family. That’s why I am here, to hopefully get some answers and solutions.” Upon asking if she was able to explain these concerns to the ED staff overseeing her care, Yamaira expressed difficulties in communicating with the doctors and nurses. “They used a phone. The blue one, to ask me questions. I tried to explain to the translator on the phone what was going on, but they only asked me a few questions and I was not able to tell them everything. I mean… I’m diabetic and I could not even tell them that. But it also was not like they asked me either.” I went on to ask whether the blue phone was used throughout her entire stay or only during the initial parts of her visit. “After they asked me those few questions, I haven’t been able to speak to anyone else. They come to get tests and I just say ‘Ok, Ok’, hoping that they’ll tell me something later.” As she was recounting her experience with communicating with the medical team during her visit, Yamaira was taking out a small black Accu-Chek machine from her purse. “62. You see that’s low”, she stated as she showed me the reading on the machine after pricking her right index finger.

At this point in the conversation Yamaira asked if it was possible for me to talk to any of the medical staff to see whether she could have two small cups of orange juice. “I haven’t eaten since before getting here.” I agreed to go speak to the medical team and see if she was allowed to have a drink or snack. On my way out of the room Yamaira additionally asked if I could also ask the staff on any updates to her tests. “I’d really appreciate any information. They put you in these rooms and it feels like you’re in limbo waiting to hear something while everyone passes.” Understanding this all too familiar experience, I went on to speak to the resident to see any updates she could provide.

The first emergent theme in this vignette centres on the inability of patients with LEP to fully communicate with the medical personnel overseeing their care. While Yamaira did not present to the ED for evaluation of a chronic condition per se, the inability to fully communicate with the medical team directly impacted her ability in explaining her medical history and other important medical information, such as her diabetes. This experience highlights how patients may have serious underlying conditions that are important to consider, other than being evaluated for a ‘non-urgent’ health issue according to the ESI triage algorithm. Yamaira’s medical history of diabetes was important to consider in part due to the length in time of her evaluation while in the ED. This experience additionally points to some of the downsides in using technology-assisted interpretation services in an ED. Yamaira’s experience of being ‘in limbo’ and feeling lost in the ED is a sentiment commonly experienced by patients that present for non-urgent conditions. This vignette begins to elucidate how this experience of feeling uninformed and lost during an ED stay is further magnified among patients who do not speak the same language as the medical personnel overseeing their care.

Health-related deservingness emerges in this vignette through some of the linguistic powerlessness that can be associated with having a limited ability to directly communicate with the hospital staff. At the time I met Yamaira, 6 hours had passed since her initial arrival to the ED and the preliminary encounter with medical personnel. The linguistic powerlessness in this case is highlighted in Yamaira’s description of being in limbo and not understanding what was going on with her specific diagnostic plan, all while agreeing to tests despite not knowing why they were being performed. Her ultimate hope was to patiently wait to get some answers and resolutions to her rash-like symptoms. This was at the cost of her blood sugar lowering due to the inability to easily communicate with hospital staff that would have allowed her to be more of a self-advocate in her care. This is not to say that Yamaira was not interested in the status of her care, but rather that the very nature of being unable to effectively communicate with ED staff directly impeded her ability to be a self-advocate in the first place. This is evident towards the end of the vignette where Yamaira asks for my assistance in obtaining updates on the status of her ED evaluation.

Vignette 2: ‘Este no es nuestro país’3

It was around 5PM on a Thursday and the ED was in its usual evening state of hustle and bustle. Emergency medical technicians (EMTs) gave nurses reports on patients who arrived by ambulance, military medics-in-training rushed to the trauma bay, and patient care techs escorted discharged patients to the elevators. While wrapping up some notes at one of the ED computer stations, I received a call on the clinical communication device used by staff members. “Hey, we have a Spanish-speaking patient going to room 3 that meets study criteria.” I thanked the nurse for alerting me and told them I would follow-up with the patient a little later during their visit to the ED.

After about two hours I went into the room, introduced myself to the patient and her husband, and explained the purposes of the study. “Yes of course, anything to help”, stated the patient after asking her whether she would be interested in participating. Natalia (pseudonym), a 61-year-old Cuban female and lung-transplant patient, came to the ED after developing shortness of breath that appeared to progressively worsen over the last three days and having a fever the night prior to the visit. “I had a lung transplant a few months ago in Gainesville. I was strictly told by my transplant doctor to be very careful with my health and to take my medications on time. Specifically, the one that is called Prograf, so my body does not reject my new lungs. I have to take all the precautions, which is why I came here because the Theraflu I was trying at home did not help me get better.” Noticing how informed Natalia was in explaining her condition and managing her health on a daily basis, I asked her what her thoughts were on the possible causes of her symptoms as well as what concerns she had overall. “The first thing that crossed my mind is, ‘Ay no, I hope it’s not my lungs failing.’ The fever worried me because that’s usually a sign that something is not right with my health. I feel better that I am here because I know I’m in good hands.”

In asking Natalia about her experience in communicating with the medical team she explained how professional and courteous the entire staff had been. “Everyone was very welcoming and respectful in treating us today.” Probing Natalia to further explain how easy or difficult it was to communicate with staff, she indicated being accustomed to using the blue phone whenever available in her hospital room as a way to explain things to the medical staff. “You obviously prefer to have someone that can speak your language, but we are very happy with any help they can provide. We understand that this is not our country and that Spanish is not what everyone speaks. We feel lucky when we find someone that is Spanish-speaking whenever we come to the hospital, but if no one is available, we try to find a way to make them understand us. In what we can of course, because sometimes you don’t have the opportunity to tell them everything, know how to say it in English, or know whether or not the translator on the phone communicated everything we say.” While I was almost done jotting down notes as Natalia spoke to me, the radiology technician (RT) walked into the room. He introduced himself, “Hi there, I’m from radiology.” “Sorry papa. Only Spanish”, responded Natalia immediately. She then looked over at me and asked if I could please translate. I introduced myself to the RT and explained to both Natalia and her husband that the RT came to get a chest X-ray to see if something was going on with her lungs. Natalia looked back over to the RT and said “Ok, no problem”. As the RT unlocked the bed and began transporting Natalia back to the radiology area, her husband gathered their belongings. As we all stepped out of the room, I thanked Natalia for allowing me to talk to her and wished her a speedy recovery from her symptoms. She responded by saying, “No, mil gracias a ti papito por hablar con nosotros y traducir para nosotros.”4

Similar to the first vignette, Natalia’s experience presents a qualitative argument of how ‘non-urgent’ and ‘not serious’ are not conceptually synonymous. This vignette points to the seriousness of Natalia’s symptoms despite not actively requiring immediate medical attention in an ED setting. Natalia’s story highlights her active involvement in her health within the restraints of her LEP. This is evident through her use of Western explanatory models in making sense of her symptoms, managing her health and seeking symptom relief at home.

Listening to Natalia share her sentiments regarding her satisfaction with the care she was receiving surprised me, because it stood in stark contrast to the experience of English-speaking patients I have previously studied. While not completely universal, English-speaking patients seeking non-urgent care appeared to be dually concerned with both their symptoms/health conditions and with the customer service they received while in the ED. Health-related deservingness emerges again in this vignette through the gratitude expressed by Natalia for any sort of medical services provided. Here one can see how Natalia’s perspectives indicate a sense of luck in having the medical team attempt to communicate with her and her husband. Instead of having someone speak her language as a demand or requirement, she was thankful for any attempts made by the medical team to understand what she was trying to communicate to them. This sentiment of luck, gratitude and appreciation for any attempts to provide healthcare services in Spanish is summed together in her discussion of how this was not her country. Here she expressed that the responsibility in being able to communicate with the medical team fell mostly on her and other patients like her. Natalia’s story presents a nuance in how some Spanish-speaking patients with LEP experience receiving ED care where attitudes of immense gratitude and individual self-blame simultaneously coexist.

The final part of the vignette additionally depicts some of the fluid interactions that occur when employing patient shadowing as a methodological approach. Towards the end of my encounter with Natalia, she expressed culturally endearing sentiments of gratitude for briefly interpreting for her as well as spending some time talking to her about her current condition, concerns and challenges when seeking healthcare services. This is a direct example of how the researcher often becomes an active participant in the same situational contexts under study. Despite not being a member of the clinical team that directly oversaw Natalia’s ED care, her sentiments of gratitude towards me as a researcher could be due to my own ethnic background of being Latinx and understandings of Caribbean Spanish that may have influenced our mutual rapport.

Vignette 3: ‘Tuve que aprender cómo reclamar ese servicio para que me tomaran en serio’5

I met Maritza (pseudonym), a 29-year-old Puerto Rican woman and cancer patient, and her aunt around 10PM, after they had been in the ED for approximately three hours. She recounted arriving to the ED via ambulance after experiencing nausea, dizziness, and severe pains at home. When asked to describe her experience in the ED, Maritza shared her long history of cervical cancer and having to frequent multiple hospitals since her diagnosis. “You sort of get used to their world after coming so often. Cancer is obviously a scary thing to face, but it’s even scarier when you can only, at best, minimally communicate with the doctors or nurses.” I followed up by asking how she went about communicating with medical personnel whenever she is in a clinical setting. “It definitely helps when I have a family member with me, like one of my cousins. However, there’s not always going to be someone available to come with me. If I’m alone, I immediately request Spanish or the blue phone. Before, I felt afraid or shy to ask, but over time you lose that. I had to learn how to request this service so that they could take me seriously.” Maritza attributed this change in attitude and outlook to her cancer diagnosis, explaining how she used to not be as assertive in trying to communicate with healthcare personnel overseeing her care prior to being diagnosed and undergoing treatment. “I understand how busy they can get. However, I can’t think of a worse feeling than when you’re in an intense amount of pain, have troubles communicating, and feel like no one is paying attention. It is a very desperate feeling. Although it may not appear that way to them, we don’t come here because we want to. There are really not many other choices.” Maritza shared her personal challenges in getting some of the nurses and medical team members overseeing her care to understand the pain she was experiencing in previous hospital visits. “When you can’t explain how you are feeling clearly, you can’t help but feel ignored or as if your pain is not that serious.” During some of her initial hospital visits, Maritza described the difficulty in requesting translation services in Spanish out of fear and recounted how she became more comfortable at requesting these services both because of the severity of her pain and the increased frequency of visits she had while undergoing cancer treatment.

This short vignette builds off the first two, again highlighting how non-urgent does not equate with not serious. This is notable in the ways that Maritza described her pain and the circumstances that led her to learn how to request healthcare services in Spanish in order to communicate her needs. This vignette reintroduces one of the themes from the first vignette where the inability of being able to speak English to the medical team incited sentiments of frustration. The frustration stemmed from feeling overlooked or not heard by the medical team, which translated into feeling as though her concerns were not being taken seriously. From the standpoint of deservingness, this interaction with Maritza made me wonder whether more serious health circumstances are the bases for patients to become more avid self-advocates in these clinical scenarios or if this was just a special case. Maritza’s experience was the most visceral of the patient shadowing encounters because of her vivid descriptions of difficulties in communicating with different medical personnel during her frequent clinical visits. Similar to the first vignette, Maritza’s experiences highlight some of the linguistic powerlessness that can be present in the clinical encounter between predominantly English-speaking medical personnel and Spanish-speaking patients with LEP. Despite being a self-advocate in this case, Maritza’s LEP impeded her ability to get the attention of the hospital staff overseeing her care in order to have her concerns regarding her pain to be addressed.

Vignette 4: ‘Solo cuando es absolutamente necesario’6

One of the attending physicians recommended going into room 7, where I met Ramiro (pseudonym), a 43-year-old Guatemalan man. Ramiro described developing a discomfort in his right eye that turned into a pressure-like feeling within the last few weeks. “It has bothered me before, but I tried to pay no mind to it. It was when I was working outside today that I got really concerned because everything looked blurry. I knew something was not OK, so I stopped working for the rest of the day and waited until one of my coworkers finished his shift to ask him for a ride here.” The conversation continued and I asked Ramiro to describe his experience in the ED. “It is a lot of waiting but what else can you ask for? They are the professionals who know best, so you just have to be a patient…well…with patience”, to which we both simultaneously laughed. Ramiro detailed his interaction with the medical staff, discussing how no translation service was used.

I curiously asked why he, a predominantly Spanish-speaking patient, did not ask for a translation service. “Well, I know a few words and tried to describe how I was feeling to the best of my ability. While I may not know English, well…like you, I would say I can defend myself in trying to explain how I’m feeling.” Ramiro later went on to explain how his nurse and doctor knew a few Spanish words as well, jokingly stating “We found a way to understand each other.”

Ramiro went on to explain his reasoning and decision-making process in determining when to seek healthcare services. “It has to reach a point where I physically cannot tolerate the pain anymore or when it comes in between my job in construction, that I’ll then go to get seen by a doctor. It is the same with my high blood pressure and diabetes.” I asked Ramiro to explain whether he has felt intimidated, shy, or embarrassed in asking questions whenever a member of the medical team interacted with him. “You certainly feel that, but you can’t be afraid to ask. A lot of my friends and family members experience that verguenza 7, which makes it all the more confusing because we already have troubles understanding English 100%. I still try to get any update from them whenever they come in. I’ll say, ‘Everything OK?’, and they’ll tell if yes or no.”

An RT came into the room and stated she came in to take Ramiro to get a CT scan of his head. “Yes”, he replied. As the RT verified Ramiro’s hospital band, he quickly looked over at me and asked, “She said I’m being admitted?” I explained that they were going to run an imaging test of his head to see if they found something. “Ah OK, yes very good. Thank you!” he responded to the RT.

This vignette presented similar themes to the previous three, where Ramiro shared his sentiments of being a patient with patience, being grateful in receiving any form of medical attention, and exercising his autonomy in attempting to communicate with hospital staff despite having LEP. Ramiro’s story highlights some of the challenges in communicating even in scenarios where patients with some English proficiency. This impacts the ability of patients to directly explain their symptoms as well as understand what was happening during their stay in the ED, as far as what diagnostic tests or procedures were being conducted. This is evident towards the end of the vignette where Ramiro did not fully understand why the RT came to get him. Here, we see linguistic powerlessness emerge again despite Ramiro exercising his individual autonomy in attempting to communicate with the hospital staff overseeing his care. This factor is important to consider, especially when many individuals like Ramiro wait until their symptoms progress to the point of becoming significantly worse prior to seeking out treatment. While the lack of insurance played a role in this case, the inability to fully communicate with staff members and understand them was just as salient of an issue. Recognising this nuance elucidates how patient care has to be carefully tailored in a way that complex health conditions can be explained, such that patients with LEP can understand. This has implications beyond the clinical encounter in the ED, impacting understandings of follow-up treatment plans important for the continuity of care and overall long-term health outcomes (Catherine Gouge, 2018; Leah S Karliner et al., 2010; Chandrika Divi et al., 2007; Ava John-Baptiste et al., 2004; Caraway L Timmins, 2002; K P Derose and D W Baker, 2000).

This vignette also illustrates the fluid and immersive aspects of using patient shadowing as a methodological technique, which is noted during the initial parts of my interaction with Ramiro when he was describing the concept of a patient with patience. My active involvement in this encounter allowed me to clarify some of Ramiro’s misunderstandings on the current status of his care while in the ED, which may not have been captured through other study approaches. This last vignette highlights many of the strengths and potentials of patient shadowing as a methodological approach in conducting clinical ethnographic research.

Discussion

Examining clinical ethnographic vignettes reveals several issues that can be investigated through the use of health-related deservingness as a conceptual framework. The contextual snapshots delineate differing ways Spanish-speaking patients who sought out non-urgent ED care perceived, understood and interpreted their rights to receive medical evaluation in their primary language. The opening to this piece captures Marcos’ mixed sentiments of frustration, self-blame in not being able to fully communicate and understand the medical team, empathy for the hospital staff not knowing Spanish, deep gratitude for any form of medical attention offered to him, and strong trust of personnel in determining the best treatment plans and courses of action for his symptoms. These complex sentiments continually arose throughout patient shadowing encounters in the ED, which are evident in the experiences of Yamaira and Natalia. Here, we see participants self-gauge their deservingness to healthcare services in their primary language based on their own abilities to communicate with the medical personnel providing the care. This begins to ethnographically depict why some of the participants repeatedly expressed sentiments of gratitude and overall satisfaction with care received in the ED, despite additionally reporting difficulties in communication, feeling uninformed throughout their visit and being unclear about their continued care plans. Using the conceptual lens of health-related deservingness also elucidates how the premise of patient satisfaction should be reconsidered among this vulnerable patient population. The concept of patient satisfaction inherently implies an idea of choice that among this patient population can be considered inconsequential when understanding that the ED may be one of their only options in receiving healthcare services (Ann D Bagchi et al. (2011); Irwin Press, 1997).

Linguistic powerlessness, structural stigma and health

Ethnographic examination offered a potential explanation on why participants in this study expressed complex and, at times, conflicting sentiments of their deservingness in receiving healthcare services. This conceptual approach highlighted some of the inherent power differentials Spanish-speaking patients experience when seeking non-urgent care in EDs. These dynamics materialised in participant experiences of linguistic powerlessness while receiving care, regardless of the patient’s own degree of self-advocacy while in the ED. While health-related deservingness was primarily used in designing and initially analysing the collected data, the emergent theme of linguistic powerlessness calls for the consideration of other analytically useful frameworks such as structural stigma.

Stigma is a term that refers to a ‘mark’ or ‘label’ that is associated with negative stereotypes and has the consequence of exclusion or discrimination against marked/labelled individuals (Bruce Link and Mark L Hatzenbuehler, 2016). Stigma is composed of several inter-related components which include dominant cultural beliefs that link labelled persons to undesirable characteristics and negative stereotypes, as well as categorical distinctions of labelled persons in ways that separate groups into ‘us’ from ‘them’ (Bruce G. Link and Jo C. Phelan, 2001). The production and perpetuation of stigma is facilitated through social, economic or political power, which largely dictate the degree of stigmatisation experienced by the relatively powerless (Bruce G. Link and Jo C. Phelan, 2001). Bruce Link and Mark L Hatzenbuehler (2016) further outline different mechanisms that are part of the stigma process. This includes discrimination that operates through the stigmatised individual (Bruce Link and Mark L Hatzenbuehler, 2016), which can manifest as internalisation of negative stereotypes and the subsequent creation of self-stigma (Patrick W Corrigan and Amy C Watson, 2002). Stigmatised statuses like minority racial/ethnic identities or undocumented status, among others, result in consequences that directly impact different domains of life, including healthcare access and overall health (Mark L Hatzenbuehler, Jo C Phelan, and Bruce G Link, 2013; Bruce Link and Mark L Hatzenbuehler, 2016).

The definition of structural stigma from Mark L Hatzenbuehler and Bruce G Link (2014) offers a useful lens by which the experiences of vulnerable patient populations can be examined. Structural stigma is the ‘societal-level conditions, cultural norms, and institutional policies that constrain the opportunities, resources, and well-being of the stigmatised’ that is bidirectionally shaped between macro-level and micro-level processes (Mark L Hatzenbuehler and Bruce G Link, 2014). This conceptual framework offers a way of simultaneously considering the interaction between top-down influences of social structures, both temporal as well as contextual, and the ground-level lived experiences of affected groups and individuals.

Structural stigma emerged in the clinical ethnographic vignettes through patient descriptions of limited autonomy, sentiments of self-blame that influenced individual frustrations of not being able to directly communicate with healthcare personnel, and gratitude for any medical attention provided. These conflicting sentiments do not exist in a vacuum and could be related to a combination of factors. For starters, social and political climates of the country can impact the way stigmatised outgroups are viewed by those in power, as well as how individuals see themselves. Previous studies have highlighted the portrayal of Hispanic and Latinx communities to be perceived through narratives of threat to the country (Leo Chavez, 2013) and as a monolithic group whose place in American society has been described as exclusionary inclusion (Raymond A Rocco, 2014). The latter term relates to the construction of the ‘perpetual foreigner’ whose belonging is devalued and contested regardless of citizenship status (Raymond A Rocco, 2014). Bradford Jones, Kristina Flores Victor, and David Vannette (2019) present findings that suggest a high degree of perceived group discrimination among Latinxs living in the USA based off of immigration status, generational status and language use. One of their findings point to first-generation Latinxs that fit into the canonical immigrant group of low status and LEP to be associated with higher likelihoods of reporting group-based discrimination as a major problem. The larger scale sociopolitical climate may manifest at the ground-level in the form of internalised self-stigma for belonging to ethnic and linguistic groups with limited power in comparison to individuals in positions of power, such as medical providers overseeing patient care. These sentiments appear to be salient among the experiences of patients in this study where some acknowledged the power differentials between them and their providers, which was magnified by their LEP and in some cases, legal status. One patient vividly expressed these sentiments through discussing her own responsibility in communicating with healthcare professionals as well as the understanding that this is not her country and it was up to her to use English, rather than them using Spanish. The complementary use of health-related deservingness and structural stigma as analytical tools offers a nuanced understanding of the unique challenges experienced by this patient population in seeking healthcare services. These challenges revolved around the inherent linguistic powerlessness individually experienced by the virtue of having LEP while attempting to communicate and interact with healthcare providers to have their medical concerns be evaluated.

Language as a Social Determinant of Health (SDH)

Recognising these power dynamics raises the argument of considering language to be a distinct SDH, because of its additional function of serving as a medium that allows a dominant group (in this case English-speaking medical personnel) to have power over and power to determine health decision making of Spanish-speaking patients. SDH is understood as the conceptual orientation that examines how social, economic, political, and physical conditions dictate health outcomes at the individual, communal, and population levels (World Health Organization, 2010). This broad theoretical framework considers how health inequities across different populations are (re)produced as a result of unique contexts and the dynamic interactions between influential social factors. These factors include socioeconomic status, education, occupation, social class, gender and race/ethnicity (World Health Organization, 2010). The collective influence of these aforementioned factors determines how individuals from different social positions experience vulnerabilities to health-compromising conditions in distinct ways (World Health Organization, 2010). The social causation perspective of this framework argues that social factors, collectively yet indirectly, explain disparities in health where strictly biomedical factors cannot (Michael G Marmot, 2007; M G Marmot et al., 1991). The social causation perspective of the SDH framework allows for the distinction between the social causes of health disparities and the social factors determining the distribution of these causes, which cannot be reduced to mechanism-oriented theories of disease causation (World Health Organization, 2010; Nancy Krieger, 2002).

A SDH framework primarily emphasises psychosocial factors associated with poor health outcomes and contends that the experience of living in social settings of inequality causes disadvantaged groups to compare their status and life circumstances to others \(World Health Organization, 2010; Dennis Raphael, 2006; Dennis Raphael and Toba Bryant, 2006; Richard G Wilkinson and Kate E Pickett, 2006). This, in turn, cultivates sentiments of shame and worthlessness among the disadvantaged that are additionally coupled with chronic stressors that undermine health (Richard G Wilkinson and Kate E Pickett, 2006). Lastly, another key component considered within the SDH framework is its recognition of power dynamics in understanding the pathways by which health inequalities and disparities are (re)produced through limiting the agency of disadvantaged groups within their sociocultural contexts (World Health Organization, 2010; Richard G Wilkinson and Kate E Pickett, 2006). Here power is understood as an advantaged group’s ability ‘over’ and/or ‘to’ determine health decision-making in ways that disadvantaged individuals are denied an active role (World Health Organization, 2010).

In the present study, language and its limitations in clinical settings like the ED can be seen as a mitigating factor in how patients experience seeking healthcare services, understand the status of their care, and comprehend outpatient measures that can be taken for further follow-up or management. As ethnographically presented through vignettes, language occupies a unique space among the influential social factors that determine the vulnerability of particular groups to health-compromising states or conditions. By health-compromising states or conditions, I do not refer to just acute or emergent medical situations, but also chronic health conditions and long-term management of health that is not temporally fixed. This was evident in each of the vignettes presented, where immediate medical attention may not have been necessary despite each participant having conditions that were worth knowing more about in detail in order to manage their overall care. A major issue at the centre these cases was the impacts of ineffective communication due to either limitations of available interpreting modalities or the individual patient’s own LEP. While language is certainly implicated among other social factors that determine health such as race/ethnicity, social class, education and, in some ways, socioeconomic status; it serves as a crucial medium by which individuals access, acquire, understand and appraise health information in order to apply it when determining when and how to seek healthcare services and medical evaluation. This is important to consider within a monolingual context, which in turn raises questions regarding how language influences health-compromising states or conditions in multilingual contexts such as that of the participants in this study.

Conclusion

The results presented from this clinical ethnographic study offer unique insights on the challenges Spanish-speaking patients with LEP experience in seeking out non-urgent ED care. Ethnographic analysis through the use of health-related deservingness as a guiding conceptual framework and complemented through the lens of structural stigma, highlights some of the overlooked and unseen experiences of this patient population when seeking healthcare services. These findings offer a way of understanding the complexities of how the nuanced sentiments of frustration, self-blame, gratitude, trust, confusion and feelings of being uninformed can be simultaneously experienced by individuals in this vulnerable patient population. The insights from the data presented in this piece draw from the field of medical anthropology and approach of narrative medicine, which from an academic perspective highlight the potential of employing patient shadowing as a useful methodological approach in the scholarly study of the patient experience in different clinical settings. The collective results and analysis from this study additionally call for the consideration and further exploration of language as a distinct SDH.

From a clinical perspective, the findings from this study call for healthcare providers and personnel directly involved with patient care to consider some of the unspoken aspects of treating patients with LEP. Ideal approaches to effective communication with these patients would ensure patient autonomy in expressing their concerns while also allowing providers opportunities to assess patient understandings. With the continued rise in overcrowding of EDs across the USA, providers and hospital administrators will have to consider ways of reducing non-urgent ED visits. One strategy among patients similar to those presented in this study is to implement measures that facilitate communication beyond just the patient’s presenting medical concerns and ensures patient understandings of both available and accessible outpatient settings where they can be safely evaluated.

The medical humanities provide a new way of exploring the relationship between health, the human, and the extents to which culture influences how patients experience seeking and receiving healthcare (Brandy Schillace, 2017; Brandy Schillace, 2015). The interdisciplinary nature of the medical humanities makes it all the more useful in investigating sociocultural issues with(in) biomedicine. The findings from this study collectively engage with the medical humanities in reflecting on and contextually examining aspects of biomedicine—in this case emergency medicine—in attempts to unpack the culturally and linguistically complex experiences of Spanish-speaking patients with LEP. This work aims to give voice to a relatively ‘unheard’ patient population while also offering medical practitioners some insight into the unspoken and often hidden barriers experienced by these patients.

Data availability statement

Data sharing not applicable as no datasets were generated and/or analysed for this study.

Ethics statements

Ethics approval

This study was approved by the institutional review board (Pro00029308) at the University of South Florida.

Acknowledgments

I would like to thank Heide Castañeda, Roberta Baer, Nancy Romero-Daza, and Jason Wilson for their feedback and support of this project.

Notes

1. ‘Well, it would be nice to understand what they are saying, but one has to be thankful for any kind of medical attention they give us’.

2. ‘Look son, I'm diabetic and I couldn’t not even tell them that’.

3. ‘This is not our country’.

4. ‘No, many thanks to you son for speaking with us and translating for us’.

5. ‘I had to learn how to claim that service so I could be taken seriously’.

6. ‘Only when it is absolutely necessary’.

7. Shyness.

Bibliography

Footnotes

  • Contributors SV is the sole contributor of the analysis undertaken in this article.

  • Funding This project was partially supported by the USF Health Division of Emergency Medicine Research TEAMHealth Scholars Program.

  • Competing interests None declared.

  • Patient and public involvement This statement was included throughout the Methodology section in discussing the main approach of patient shadowing: 'The use of patient shadowing facilitated the researcher–participant relationship when considering that both parties were closely involved in the generation of the qualitative data being collected, as well as the interpretation of the contexts under study. While the researcher has general areas of interest to explore, consenting participants predominantly guided the data collected through their own open-ended discussions of their experiences in real time. This allowed for the prioritisation of the patient’s experience in articulating their perspectives' (pp 8,9). A follow-up to this was added in discussing the data collection approach: 'This approach to data collection was iterative through continual clarification on the statements and experiences shared, in order to prioritise the perspectives of the study participants' (p 10).

  • Provenance and peer review Not commissioned; internally peer reviewed.