Language – a vital pill missing in patients’ treatment: language barriers during cancer care through the eyes of patients and families

ABSTRACT

Purpose

When serious illness occurs, effective communication is essential but challenged by language barriers. This study explores how patients with limited Danish proficiency and their families experience language barriers during cancer care in two Danish public hospitals.

Method

Adopting a phenomenological-hermeneutic approach, the study stresses narratives in understanding participants’ lived experiences. Accordingly, nine qualitative, semi-structured interviews were conducted with 17 informants, including nine patients and eight relatives. The interviews were audio-recorded and transcribed verbatim.

Results

Based on analysis, three themes were identified: 1) A history of pain behind the language barrier; 2) Linguistic pain—a feeling of being trapped in mother tongue; and 3) Barriers and pathways to linguistic safety. The findings reveal that painful stories were not only brought into the hospital but continued there. Painful feelings associated with being unable to communicate directly with the healthcare professionals seemed inescapable, but continuity of empathetic care providers, including professional interpreters, increased the well-being of both patients and family members.

Conclusion

Language barriers not only make patients more susceptible to misunderstandings and medical errors but amplify experiences of pain during cancer care. The generated knowledge from this study emphasizes language as a foundational element in advancing more equitable cancer care.

Introduction

As human beings, we need coherence to make sense of our being in the world (Ricoeur, 1990). By means of narrative, we either consciously or unconsciously structure events to create meaning in what happens around us—and to us (Bruner, 1991; Labov & Waletzky, 1997). People who become seriously ill may experience life becoming interrupted by the event of illness (Kleinman, 2017). The narrative that was once familiar may suddenly lose its coherence, and the world may no longer feel like a safe place to be. Thus, in the face of illness, when meaning must be restored, communication with healthcare professionals can be vital to patients’ well-being (Mattingly et al., 2008).

Most people who become patients, however, perceive the hospital itself as a foreign place, where an equivalent unfamiliar language—the language of medicine (Mishler, 1984; Wulff, 2004)—needs to be acquired. Even native-speaking patients often struggle to understand the provided health information; either due to low health literacy (Holden et al., 2021), because they are unfamiliar with the medical terms (Farmanova et al., 2018), or because the information is simply too overwhelming to grasp (Mitchell, 2022). Nonetheless, when it comes to serious illness, like cancer, it is often associated with both physical pain and emotional fear and distress for both patients and their families (Mestdagh et al., 2023; Sandén et al., 2019), and positive health outcomes rely on the extent to which shared understanding is achieved (Hughes et al., 2018; Kwame & Petrucka, 2021). For that, we use language.

For people who are limited dominant language speakers, becoming a patient can, therefore, be associated with even further challenges. Whether people have migrated voluntarily or been forcibly displaced by natural disasters or war (Ermansons et al., 2023), they now find themselves in a healthcare system where not only the medical, but the entire spoken language is foreign. While the international literature consistently highlights language-based disparities in both health and health care (Ajayi Sotubo, 2021; Gerchow et al., 2021; Seible et al., 2021; Zavala et al., 2021), a recent study of language-discordant cancer communication systematically demonstrates the correlation between language barriers, miscommunication, and lack of patient involvement in decision-making (Birkelund et al., 2024).

Although language barriers can have major physical and emotional health consequences, few studies include the perspectives of patients who speak a completely different language than the healthcare professionals (Lambert et al., 2021; Olani et al., 2023; Squires et al., 2023). In fact, to our knowledge, no studies have yet invited this group of patients and their families to share their experiences of language barriers during clinical cancer care.

Aim

This study aimed to explore how patients with limited dominant language proficiency and their families experience language barriers during cancer care, in light of factors important for their illness and treatment experiences.

Method

The study applied a qualitative research design using semi-structured interviews (Kvale & Brinkmann, 2008). Adopting a phenomenological-hermeneutic approach, this research emphasizes the significance of narratives in understanding participants’ lived experiences (Ricoeur, 1990).

Setting and participants

The study constitutes the second phase of a broader field study that delves into the communication dynamics between patients and oncology clinicians in two outpatient cancer clinics in Denmark. The participants in this subsequent study were among those initially included in an earlier observation study (Birkelund et al., 2024) and consist of patients with cancer and limited Danish proficiency and family caregivers. Following the initial study, four out of 13 recruited patients opted not to continue participation due to reported lack of energy, while nine patients, from six different countries and between the age of 48 and 70, opted to continue. According to the patients’ preferences, eight relatives participated in five of the interviews. Thus, nine interviews were conducted with a total of 17 informants. Five interviews were conducted in the patients’ homes, while four interviews were conducted in the hospital in connection with already scheduled clinical appointments.

All patients were offered free professional interpreting. A professional interpreter participated in five interviews, whereas three families preferred only the presence of the interviewer (LB) and decided on a Danish-speaking relative to act as interpreter. One interview was conducted in Danish as per the patient’s request. Finally, the interviews encompassed eight different languages, and the average duration was 75 minutes. For further interview characteristics, see Table I.

Table I.

Interview characteristics in a Danish study investigating language barriers during cancer care.

Pseudo initials	Gender	Patients’ country of origin and native language	Location and duration (recording)	Applied languages	Additional participants
I1	Female	Ukraine (Ukrainian)	Hospital (office room) 1 h 16 min	Danish /Ukrainian	One non-Danish speaking family member and a professional interpreter (phone)
I2	Male	Turkey (Turkish)	Family’s home 1 h 23 min	Danish/Turkish	One Danish-speaking family member and a relational interpreter (friend)
I3	Male	Bosnia (Bosnian)	Patient’s home 44 min	Danish	None
I4	Male	Ukraine (Ukrainian/ Russian)	Family’s home 1 h 26 min	Danish/Ukrainian/ Russian	One Danish-speaking family member
I5	Female	Ukraine (Ukrainian)	Patient’s home (temporary accommodation) 1 h 27 min	Danish/Ukrainian	A professional interpreter (phone)
I6	Male	Syria (Arabic)	Hospital (treatment room) 41 min	Danish/Arabic	A professional interpreter (phone)
I7	Female	Ukraine (Ukrainian)	Family’s home 1 h 52 min	Danish/Ukrainian	One Danish-speaking family member
I8	Female	Vietnam (Vietnamese)	Hospital (treatment room) 41 min	Danish/Vietnamese	A professional interpreter (phone)
I9	Female	Romania (Romanian)	Family’s home 1 h 49 min	Danish/English/Romanian	Three English-speaking family members and a professional interpreter (phone)

Ethical considerations

In compliance with GDPR requirements, the study was approved by the Danish Data Protection Agency (REG-22-30001), and the Helsinki Declaration principles were respected. Based on Danish legislation, the regional scientific ethics committee was applied and determined that no further ethical approval was required due to the study design (journal no.: 20202000–236). Participants were informed in their preferred language both orally and in writing and through a short, interpreted video introduction (Birkelund, 2022) to ensure that consent was sufficiently informed and to build interpersonal trust.

Data collection

Data collection took place between October 2022 and March 2023. The interviews were conducted by the first author (LB) approximately 14 days after observing the patients’ clinical encounter in the first study. All interviews were audio-recorded. Data from the first study were used to prepare and nuance the interview guide used in this present study. With a narrative approach (Mattingly & Lawlor, 2000), questions addressed both past and present experiences and were asked in a way that allowed for stories to unfold that could possibly have an impact on the participants’ experiences of cancer care in Denmark.

Importantly, questions were asked with a sensitivity to the serious topic of conversation, and with respect of the fact that people might want parts of their life stories to remain untold. Accordingly, the interviewer carefully considered and nuanced the questions as the interviews progressed and made it explicit that the participants could always refrain from answering. Also, being aware of the patients’ current life circumstances, the interviewer was attentive to time and offered to end interviews whenever the patients signalled fatigue.

Data analysis and interpretation

Analysis and interpretation was inspired by Paul Ricoeur whose philosophy emphasizes the importance of narrative, not only as a methodological approach but as an analytical tool in understanding people’s experiences (Ricoeur, 1990). According to his theory of interpretation (Ricoeur, 1976), understanding takes place in dialectical movements on three levels: naïve reading, structural analysis, and critical interpretation. Incorporated into his theory is the concept of “distanciation”. As a first step in creating distance from the interview situation, audio-recordings were transcribed verbatim (in Word) by the first author (LB), providing access to the participants’ narratives as written text.

To remain open to various interpretations and possibilities of understanding, the naïve reading involved continuous reading of the transcripts, allowing for a broad understanding of the material as a whole. The structural analysis aimed to capture a more objective meaning and served as an important next step in the process of distanciation. During this phase, the text was divided into smaller units of meaning, from which units of significance were derived, and themes were identified as exemplified in Table II. The structural analysis was continuously discussed with the last author (DN), and the final themes were refined in collaboration with all co-authors. Finally, the choice of literature in the discussion, as part of the critical interpretation, was based on the study findings and discussed among all authors.

Table II.

An example of the structural analysis process from quote to theme.

Units of meaning (What is said in the text)	Units of significance (What it says something about)	Theme
“It’s difficult to express my feelings” (I5) “It’s hard. Sometimes I want to express myself fully with my feelings, my thoughts, to the doctor and to the nurse, and to all the people who treat me, but it’s hard to get it out” (I8)	Being unable to express feelings	Linguistic pain—a feeling of being trapped in mother tongue
“I told them, ‘I feel like this and that’, but the interpreters could not describe it” (I4) “The interpreter can’t feel what I feel” (I2) “It’s a bit tricky with interpreters because they can’t translate a hundred procent” (I3)	Being unable to have one's feelings translated
“It’s very difficult, especially because there are some professional [medical] concepts that you need to understand in a proper way, especially when talking about such a monster that has inhabited your body” (I9)	Being aware of potentially harmful consequences of misunderstandings
“How do I explain that I’m in pain?” (I6) “You can’t defend yourself” (I2)	Being defenceless against pain
“You feel very, very bad when you can’t understand […] You just dissappear from that room and you’re completely locked in your own world […] Language is like a missing pill in treatment” (I7)	Being linguistically trapped
“It’s actually pure torture for an ill person not to be able to speak the language (I2)	Being subjected to torture

Researcher positioning

Given the interviewer’s (LB) ethnic Danish background and native language (Danish), which may reinforce power imbalances embedded in interviewer-interviewee relationships, the interviewer’s background as a language teacher and non-healthcare professional was emphasized in both the aforementioned video introduction and at the beginning of interviews. Many years of teaching adult second language learners have strengthened the interviewer’s awareness of the impact of first language background on second language acquisition (Flege et al., 1999). In this respect, a preunderstanding had already been established of the many possible factors that can become barriers to learning and understanding and of the close link between language and emotions (Caldwell-Harris, 2014; Mickan et al., 2019). Consequently, the first author (LB) neither considered it possible nor desirable to assume an objective role as an interviewer. On the contrary, positioning has been used actively to allow for conversation about a vulnerable topic to unfold in a both purposeful and respectful manner.

Findings

Based on the structural analysis, three themes were identified: A history of pain behind the language barrier; Linguistic pain—a feeling of being trapped in mother tongue; and Barriers and pathways to linguistic safety. In the following presentation of findings, minor adjustments have been made in the included quotes to allow for the patients’ and families’ voices to stand out more clearly. Thus, in cases where interpreters made use of “he/she/they/them” in their interpreted speaking turns, these pronouns have been replaced with “I”, “we”, and “us”, respectively.

A history of pain behind the language barrier

During the interviews, the patients, who had previously been observed to be quiet and reticent during clinical encounters, narrated vividly about their lives before and after illness. Though their stories included painful past events, the patients did not refrain from sharing them. As one patient put it: “It was my life, and I went through it, so … ” (I4). The experience that past events had become a painful part of not only the patients, but the entire family was expressed by another patient: “I have experienced so many violent things in my life because of war and our country. They became a part of our life, the violent experiences” (I6).

When asked about life with illness in Denmark, the patients’ experiences were clearly conditioned by language barriers. While the amount of time spent in Denmark varied significantly, lack of expose to Danish seemed to be the common denominator of the patients’ limited Danish proficiency. The Ukrainian patients had arrived in the country within the last year, whereas the Syrian patient had fled from war years ago but had been exempted from Danish language school due to traumatic experiences. Finally, two patients who had arrived in the country as migrant workers several years ago described having felt avoided by Danish-speaking co-workers and working alone “with no one else to talk to” (I8). One of them made the following reflection on his limited Danish skills:

Back in the days when I came to Denmark, it wasn’t a requirement that you should learn the language. It was important that you entered the labor market and contributed, but of course I’ve tried with my own resources and tried to learn the language.

(I2)

Though moving to another country was described as, “stepping down from the treadmill and having to learn to walk again” (I2), being able to move around and communicate with others were still considered meaningful, human factors. Consequently, several patients described how they were trying to learn the language but shared the experience of illness as a barrier to both life and language learning. Side effects from treatment, including fatigue and nausea, were described as limiting the patients’ lives, which a few patients even described as not meaningful. One of the patients, who had been used to walk long distances every day, described how he wanted to, “live life as before, not as a vegetable, but as a normal human being” (I4). Another patient similarly described feelings of having lost everything that made him human, including his job: “I loved working, but now I’ve lost that too. I feel like a plant” (I2).

While several patients pointed to their concentration and memory being affected by their medical cancer treatment, two patients experienced side effects of neurosurgery. One of them (I3) described how his eyesight was challenged, which prevented him from reading, while the other patient concluded: “After 10 minutes, my Danish level is at rock bottom” (I2), emphasizing that not only his language learning abilities were affected by illness but so was his already acquired second language skills. In addition to side effects from treatment, thoughts about illness challenged language learning: “I lose concentration. I attended a course yesterday, online, but it takes 15–20 minutes, then thoughts about language disappear and then come thoughts about illness” (I4). The patient, who had recently come to Denmark, had therefore promised his wife to live another 10 years so that he would learn to speak the language.

Irrespective of the patients’ levels of Danish proficiency, the desire to be able to speak the language fluently was consistent. This was underscored by a patient who had arrived in the country as a Bosnian refugee and wanted the interview to be conducted in Danish to practice his language skills. During the interview, the patient revealed that the Danish he had acquired until now was something he had picked up at the hospital. As he concluded: “This is my story, written the last 10 years in the hospital” (I3).

Although most patients described their current state of mind in negative terms and reported on being challenged by time-consuming hospital visits and transport, a fundamental gratitude was prevalent. Those who had fled from war underlined the importance of feeling safe in Denmark, and both patients and family members were grateful for receiving free healthcare. A Romanian family even described free access to healthcare provided by non-corrupt health professionals as a “culture shock” (I9). Behind gratitude, however, feelings of fear and anxiety for what was happening in the home country seemed inescapable: “I feel safe in Denmark, but I constantly think about my home country and how people there feel, and that feeling doesn’t allow me to relax and enjoy life here” (I5).

Thus, it became clear that behind the language barrier, both past events and current concerns had become a painful part of the patients and their families. Importantly, these elements seemed to be constitutive of their illness and treatment experiences in Denmark. This was underscored by a Ukrainian family who expressed concerns for patients in Ukraine who cannot afford to pay for cancer treatment. To avoid being a burden to the family and prolonging pain because of missing treatment, the family described how receiving a cancer diagnosis equals a death sentence in Ukraine; and is an incentive to suicide. As the family member bluntly concluded: “Those who have cancer in Ukraine, they don’t have a chance […]. I haven’t heard of anyone sending thousands of chemo pills, I only hear we send bullets and missiles, sadly” (I4).

Linguistic pain—a feeling of being trapped in mother tongue

Despite a feeling of having been given a chance to survive, the interviews revealed that the painful stories were not only brought into the hospital but continued within the hospital. The patients were acutely aware of correct understanding being crucial to their courses of treatment which was clearly formulated as follows: “The most important thing is of course that you don’t misunderstand each other, that the dosage of pills is correct, because the treatment must be correct” (I1).

At the same time, however, the patients expressed a profound inner challenge associated with being seriously ill and unable to communicate directly with the healthcare professionals. In this connection, the patients’ stories revealed a link between language, illness, and emotions which was often voiced through metaphorical language, underscoring the seriousness of the illness and emotional character of the topic. To exemplify, a patient, who described being unable to communicate directly with the nurses and doctors as “pure frustration”, elaborated as follows: “It’s very difficult, especially because there are some professional [medical] concepts that you need to understand in a proper way, especially when talking about such a monster that has inhabited your body” (P9). The way in which the patient used “a monster” as a metaphor for her cancer diagnosis not only stressed her awareness of correct understanding being crucial to her treatment but of the potentially harmful consequences of misunderstandings. This awareness was accentuated by a Ukrainian patient who was concerned that use of Russian-speaking interpreters during her cancer care could potentially affect her medical adherence negatively:

Maybe I’m missing some words [in Russian], but the missing words might have huge importance, and if you don’t get it, it might give a completely different meaning, or I might not get all the information I should have, so of course it [the language] plays a huge role.

(I5)

As indicated, language, illness, and emotions not only seemed inseparable but closely linked to pain. While one patient described how not being able to express her feelings “annoyed” her (I8), other patients used stronger and more negatively loaded adjectives:

If I’m in pain, how do I explain that I’m in pain, or of course, it’s difficult without an interpreter. If you don’t have an interpreter and you can’t explain what you need, you go home, you become hopeless and that’s how you get frustrated. If you can’t express yourself, you go home.

(I6)

As the quote demonstrates, language barriers were both associated with prolonged physical pain and with strong negative emotions, including frustration and hopelessness. At the same time as the patients described how being unable to express themselves and their feelings reinforced negative emotions, more patients recalled experiences of negative emotions intensifying nausea or causing breakthrough pain, such as severe headaches.

Consequently, the patients’ experiences seemed to reveal a vicious circle of language-based pain but also an experience of not having any language as a defensive shield against this pain. To exemplify, another patient repeated how he wanted “to fight” during his course of illness. Meanwhile, he also described how he ultimately feels forced to resign because he does not “know” the language of the healthcare professionals:

When you can’t express yourself, you become aggressive, you get upset and emotions come into play […]. You can’t stand there and contradict the other party when you don’t know the language. If I knew the language, I could’ve stood there and defended myself in a hospital or with my own GP at times.

(I2)

In addition to feeling defenseless in discussions about his own health, this patient was further burdened with feelings of guilt and shame for not having learned the language:

The interpreter can’t feel what I feel […] and then I find myself a little more guilty, you know, self-inflicted, for not having learned the language […] You leave [for the hospital or GP] and feel ashamed. Is anyone going to understand me? Does anyone want to understand me? Is anyone going to take care of me? Will anyone lend a loving hand? Thoughts overtake your illness because you actually have to stand there and put an end to your feelings.

(I2)

Though their initial behavioural patterns seemed to differ, and only this one patient described initial anger, the patients seemed to end up with a similar feeling of being trapped in their mother tongue, ultimately making them quiet and passive. To further illustrate, another patient not only described how being unable to understand the healthcare professionals’ spoken language makes her feel, but how it makes her mentally disappear into another place in conversations about her own illness: “You feel very, very bad when you can’t understand what they’re saying and you’re looking for information about your illness. You just disappear from that room, and you’re completely locked in your own world” (I7). While the patient described feeling linguistically trapped and mentally alone, she also pointed directly to potentially negative health outcomes when she concluded that, “language is like a missing pill in treatment” (I7).

Thus, regardless of ethnic background and time spent in the country, the patients’ stories seemed to revolve around a certain kind of linguistic pain rooted in being unable to communicate directly with the healthcare professionals. This was cemented by one of the patients who not only described the feeling as “pure frustration” (P9) but used an image of torture when he concluded that, “It’s actually pure torture for an ill person not to be able to speak the language” (I2).

Barriers and pathways to linguistic safety

Though being unable to communicate directly with the healthcare professionals seemed inextricably linked to feelings of pain and unsafety, more factors both negatively and positively impacted the experiences of language barriers. Finding themselves in linguistically unsafe situations, a few patients highlighted positive experiences with bilingual healthcare professionals while, more commonly, patients and family members stressed the importance of being cared for by empathetic professionals. Reassuring body language, e.g., was emphasized as an important human factor in communication.

Accordingly, feelings of safety seemed closely related to caregiving but, more importantly, various persons were perceived as significant contributors to the caregiving experience. As already described, more patients and families had negative experiences with healthcare in their home countries, but being attended to by the same medical team was underscored as a positive aspect. When invited to elaborate, the answers were concrete and constructive. To illustrate, a family described how lack of continuity of doctors and nurses in Denmark increases emotional stress. Also, reflecting on his own time being limited by illness and new staff having to read through his medical record, another patient pointed to continuity of medical staff reducing negative feelings and being timesaving at the same time: “I don’t have that much time [left], so it’s just a waste of time, of my time and theirs” (I4).

Time was not only perceived as an important factor for patients and medical staff. Family members were often the constant providing care, whether it be the 80-year-old mother who did not speak any Danish but made sure that dinner was served every day (I3); or the daughter who was always by her mother’s side (I7). The daughter had not only quit her job to take care of her terminally ill mother but had been asked to interpret for her mother during her medical consultations. Though it was clear that family members played an important part in reducing patients’ feelings of unsafety during clinical encounters, in more cases, it seemed that pain had been transmitted to family members. To illustrate, the daughter in the above example not only estimated herself to “know only 70% Danish” but revealed that she did not always have time to translate everything; becoming indirectly responsible for missing words (i.e., pills) in her mother’s treatment.

Being unable to interpret everything was not only associated with lack of time or level of bilingual competence. Another family member described it as an emotionally impossible task as she recalled the day where she had to interpret for her own husband that his cancer had returned, and that he was not going to survive. As she said: “I couldn’t translate everything, I was too busy crying. It doesn’t matter whether I speak Danish or not … imagine if it was our daughter [who was with him that day]” (I2). Referring to the specific episode as “horrible”, the family member suggested making exceptions when it comes to serious conversations: “I think they should make an exception, I mean, even if they have Danish-speaking relatives, there should still be an interpreter, that’s my opinion” (I2).

Meanwhile, professional interpreters were not only experienced as important for reducing the burden on family members but were assigned significant roles beyond being communication facilitators. While more families highlighted purely technical factors as obstacles to understanding, such as audio sound issues making it difficult to hear the video interpreter clearly, one patient described how getting access to basic understanding of medical information made her feel “somewhat safe” (P8). Others called for more empathy as they recalled experiences with video interpreters who, “translate very directly and without feelings” (I7). One family even described videoconferencing as, “like talking to Siri” (I2) and preferred physically present interpreters.

In addition to professional interpreters’ human qualities, the importance of continuity was highlighted as fundamental for increasing feelings of safety as expressed by a patient: “There have been situations where a female interpreter has been booked who’s been told about the whole situation and my whole history. We’ve felt safe then” (I9). This family, therefore, also had a concrete suggestion for improvement:

What could be done better is if the healthcare system’s collaboration with an interpreter is continuous, so that patients get an interpreter who’s been assigned to them, the same interpreter if possible, so that you could have this sense of safety around you.

(I9)

Whereas only this patient referred to the interpreter’s gender, several patients emphasized the importance of interpreters’ linguistic backgrounds as indicated earlier. To illustrate, a few patients described how they had experienced interpreters whom they felt were not competent enough in their own native language, while a Turkish patient described negative emotions associated with Kurdish-speaking interpreters. To a Ukrainian patient, who described himself as a native speaker of both Ukrainian and Russian, use of Russian-speaking interpreters during his cancer care made no difference. As he poetically put it: “It’s not language that creates war, humans do” (I6). While for this patient, it was neither a question of precise understanding nor negative emotions, he did, however, reveal that his own son refused to speak Russian.

Based on the above, the following recommendation aimed at increasing feelings of linguistic safety for the entire family: “Those who are language-impaired in society and have a serious illness at the same time should have a permanent contact person to communicate with” (I2). In fact, professional interpreters were not only perceived as an integral part of the medical team but as an important part of the patients’ treatment. This was underscored by a patient who described how it feels to be understood during cancer care. Again, the patient used imagery. This time, not only to illustrate how linguistic safety can be found in relational continuity of care, but how language becomes equivalent to medicine when shared understanding is achieved:

I’m not alone. There’s someone who understands exactly what I feel and what I need. When a patient can’t understand anything, and then someone comes along who understands exactly what you mean, what you feel, then it’s like the pills you use in your treatment.

(17)

Discussion

Exploring patients’ and family members’ experiences of language barriers during cancer care showed that both past and present painful experiences had already come to partly define their current illness and treatment experiences in Denmark. Whether their stories revolved around war, disrupted identities, or barriers to second language learning, painful experiences now seemed to constitute an inescapable part of them. The painful stories continued in the hospital, where the patients’ narratives pointed to a lived experience of linguistic pain; a metaphor used to describe torturous feelings associated with language barriers.

Several writers have already described how cancer and side effects from treatment not only limited their lives but affected their sense of self (Frank, 1995; Kalanithi, 2016). In his posthumously published autobiography, neurosurgeon and cancer patient, Paul Kalanithi, e.g., describes how racking back pain, fatigue, and nausea moulded his identity (2016:140). Like Kalanithi, patients in our study described feeling bodily estranged. Meanwhile, whereas illness was experienced as putting them in a vegetative state of being during their daily lives, so were language barriers during their clinical encounters. Similar to patients suffering from locked-in syndrome yet functioning cognitively well (Nilsen et al., 2023), patients in our study described being in a different language as being locked in a completely different place.

When people find themselves in vulnerable situations and may even experience having lost everything, they often resort to their mother tongue as the one familiar place providing safety (Sodemann, 2022). This was not found to be an option in our study. On the contrary, our findings illustrate how the patients had not only entered a foreign healthcare system but felt linguistically trapped in conversations about their own illness. In accordance with existing literature (Bourke, 2012; Bustan, 2016; Munday et al., 2022), metaphors are often used this way to voice experiences of pain and suffering; difficult to express otherwise. In our study, cancer was not only compared with a “monster”, but language barriers were associated with painful feelings such as frustration, loneliness, and hopelessness as well as shame, guilt, and defencelessness.

Other studies have already demonstrated difficulties associated with communicating feelings during language-discordant care (Graven et al., 2023; Squires et al., 2023). In a study of social suffering among Greenlanders in Denmark, Graven et al., e.g., specifically found patients unable to verbally express pain, while Squires et al., also found feelings of frustration, isolation, and anxiety for medical errors among limited English-speaking patients in the US. Relevant in this context, American philosopher, Judith Butler, uses the concept of “linguistic vulnerability” (Butler, 2021) when discussing the painful consequences of injurious speech. Butler equates emotional pain with physical pain. Though pain, in our study, was not inflicted by wounding words as in Butler’s context but rather by being unable to communicate directly with healthcare professionals, language was equated with missing pills in treatment. Important in the context of cancer care, our findings even revealed that emotional and physical pain intensified each other, stressing how not only illness, but language makes patients particularly vulnerable to pain. Based on our findings, we therefore support the urge for increased focus on the social dimensions of pain (Graven et al., 2023), but we also advocate for a particular focus on linguistic suffering during cancer care.

Notably, linguistic pain was neither found to be biologically defined, nor in any way ethnically or racially biased (Hoffmann et al., 2016), but rather contextually defined by the place the patients found themselves while being seriously ill. As such, our findings point not only to the dangers of language barriers but to the many possibilities that language holds. Important in a busy hospital setting, patients and family members highlighted factors that could simultaneously release time, create safer environments, and improve their illness and treatment experiences. In fact, our study suggests possible ways to relieve experiences of pain. Specifically, our findings show that when mother tongue ceases to provide patients with safety, relational continuity of care becomes significant for the well-being of both patients and family members. Importantly, continuity of empathetic, professional interpreters not only provided a pathway to linguistic safety but by enabling shared understanding, they were considered an important part of patients’ treatment.

The literature already well-documents the importance of continuity among medical staff, regardless of patients’ ethnic and linguistic backgrounds (Heerdegen et al., 2017; Radl-Karimi et al., 2022), and interventions have been initiated to bridge communication gaps and provide collaborative cancer care to other patient populations (Irwin et al., 2019; Montori et al., 2023). However, even collaborative care models that appear feasible at the outset become complex in the presence of language barriers. Montori et al., e.g., argue for shared decision making as a method of care and propose four simple steps of implementation. The first step is to foster a conversation where patients and clinicians are invited to collaborate; and where insights can be shared about not only patients’ biology but biography, possibly relevant to their cancer care. Yet, when patients feel linguistically trapped as found in our study, even fostering a conversation is challenged. Not only were painful experiences found to constitute an “emotional aspect” during cancer care, but language barriers became an “unaddressed medical problem” (Montori et al., 2023) leaving patients unable to share their stories (biography).

To return to Kalanithi (2016), he describes how he felt alienated from his own body, but he also describes how a doctor and her particular way of communicating enabled him to restore some kind of meaning in the face of death. Kalanithi even compares the power of the physician’s words with that of a neurosurgeon’s scalpel (2016:166). Yet, while clinicians’ empathetic, human qualities and communicative competencies are important indeed (Charon, 2001; Dawood, 2010), they do not suffice when the spoken languages are completely different. In this respect, while another study has recently demonstrated linguistic disparities in access to cancer care even before patients physically enter the hospital (Chen et al., 2023), our study demonstrates lived experiences of such disparities during cancer care.

To promote equitable access to quality care and mitigate the extent to which experiences of language barriers add to patients’ and family members’ history of pain, we propose a rethinking of care. Specifically, we emphasize the crucial role of professional interpreters not only in bridging language barriers but in alleviating emotional fear and distress. This includes the vital task of ensuring that vulnerability does not “transmit” to family members (Nielsen et al., 2018; Sarangi, 2020) who become burdened with responsibilities for missing words potentially leading to mistakes in patients’ medical treatment.

The way language was compared to pills in treatment stresses an understanding of language as much more than a communicative tool (Hemberg & Sved, 2019); it suggests language as medicine. Acknowledging both the dangers and potentials of language should not be confined to healthcare encounters with patients with limited dominant language skills. Highly probable, considering language as medicine could benefit other patient groups, particularly those who are limited in their ways of expressing themselves, e.g., due to aphasia (Leaman & Archer, 2022), dementia (Cummings, 2020), or mental illness (Irwin et al., 2019). Or to put it as one of the patients in our study did; patients who are “language-impaired” and, thus, particularly susceptible to becoming linguistically vulnerable in healthcare encounters.

Limitations and strengths

The participants and interviewer (LB) did not share the same native language, and in all but one interview, communication was interpreter-medicated whereby nuances are assumed to have been lost during the process of interpretation. Moreover, while participation of family members nuanced perspectives, in some cases, the patient perspective might have come out more clearly without their presence as “protective buffering” is commonly used within families (Rothausen et al., 2023). Occasionally, language barriers made it difficult for the participants and interviewer to understand one another. Given the methodological choice that interviews should be conducted according to the patients’ preferences, these were the terms of data collection.

While the inclusion of family members and professional interpreters may have changed the dynamics of the interviews, their presence reflects the reality of patients’ experiences and contributed to a more inclusive dataset. Similarly, the relationships that were built before and during the interviews, including the vulnerability that participants dared to show, are assumed to have positively impacted data collection. This study gives voice to a group of patients and families who are usually excluded from research purposes, let alone political decision-making (Beresford, 2013). In this regard, use of qualitative methods, including narrative as an epistemological tool, has revealed that much more is (linguistically) at stake than can be clinically observed in encounters between patients and health professionals who speak different languages.

Conclusion

Given that even people who have lived their entire lives in a country may not necessarily have developed linguistic competencies to be able to engage effectively in health communication, it can be difficult to envision how people who have lived only parts of their lives in a country could. While access to pills (medication) may be concretely missing in cancer treatment in many patients’ home countries, language becomes another kind of vital pill missing in their cancer treatment in Denmark. Though this study demonstrates that painful feelings are inescapable, it also stresses the importance of continuity of care. Particularly, it underscores the significance of empathetic, professional interpreters when not only the hospital, but one’s own language becomes an unsafe place to be.

The description of being unable to communicate directly with healthcare professionals as torture underscores the serious health threats that language barriers pose. Language barriers not only make patients more susceptible to misunderstandings and medical errors but amplify patients’ and family members’ experiences of pain during cancer care. Based on the findings of this study, we not only urgently call for more focus on the adverse effects of language barriers but for recognizing language as a foundational element in advancing more equitable cancer care.

Biographies

Lisbeth Birkelund is MA in English and Nordic Languages and Literature and a PhD candidate at Odense University Hospital and the Research Unit of Geriatric Medicine, Department of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Denmark. A combination of many years of teaching language courses to adult second language learners and a profound interest in language-based inequality led to her current PhD project in which she investigates the impact of language barriers on the encounter between seriously ill patients and healthcare professionals who do not speak the same language. Targeted at mitigating the many consequences of language barriers, her research takes a multiple-perspective approach to language-discordant health communication.

Karin Brochstedt Dieperink is a nurse and Professor in Cancer and Family Care in the Department of Oncology, Odense University Hospital (OUH) and Department of Clinical Research, Faculty of Health Sciences, University of Southern Denmark (SDU). Her research areas include cancer, supportive care, rehabilitation, palliative care, and families. She is Head of research at the Family focused healthcare research Center (FaCe). The overall aim of FaCe is a multidisciplinary research centre and a research programme with a focus on the health of patients and their close family members affected by acute or chronic conditions across the patient trajectory.

Morten Sodemann is a senior consultant and Professor of Global and Migrant Health in the Department of Infectious Diseases at Odense University Hospital (OUH) and the Department of Clinical Research, Faculty of Health Sciences, University of Southern Denmark. He is Head of the Migrant Health Clinic located at OUH. He has extensive experience as a teacher and research supervisor. He is involved in postdoctoral training in cross-disciplinary clinical skills and has established a migrant health curriculum at the medical school of SDU. He has authored several books on migrant health, including the textbook “What You Don’t Know Will Hurt the Patient” (2022).

Johanna Falby Lindell is MA in Psychology of Language and Tenure Track Adjunct in the Department of Nordic Studies and Linguistics at the University of Copenhagen. Her current research involves conversations between healthcare professionals and migrant patients, including barriers and opportunities for creating shared understanding, communication and negotiations between doctors and patients about antibiotics, and emotional expression in chronic patients with a previous cancer diagnosis in general practice. Her teaching and tutoring areas include psychology of language, health communication, conversation analysis, interaction analysis, Goffman, migrant health.

Karina Dahl Steffensen is a medical oncologist and Professor of Shared Decision Making in the Department of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark and Lillebaelt Hospital, Vejle, Denmark. She is Head of Center for Shared Decision Making (CFFB) and the research leader for the centre’s research and project unit located at Lillebaelt Hospital. CFFB is a research and competence centre that takes a practical approach to the concept of “shared decision making”. The centre’s mission is to research and implement shared decision making in clinical practice through collaboration with patients, clinicians, and decision-makers. She is listed in Kraks Blå Bog and serves on the boards of the Nordea Foundation and the Tietgen Foundation. She is the chair of the Research Council at Lillebaelt Hospital and a member of the Scientific Committee of the Danish Cancer Society (KBVU-BK).

Dorthe Susanne Nielsen is a nurse and Professor in Vulnerability in the Department of Geriatric Medicine, Odense University Hospital (OUH) and the Research Unit of Geriatric Medicine, Department of Clinical Research, Faculty of Health Sciences, University of Southern Denmark (SDU). She has previously been employed as a professor in the Migrant Health Clinic at OUH. She is Head of Research centre of Culture and Older People (vulnerability) (COPe). The research centre seeks to identify factors that contribute to vulnerability and to develop effective interventions and strategies to promote quality of life and well-being in older people. The mission will be achieved by fostering collaboration among researchers, practitioners, and community stakeholders, and by translating our research findings into policy and practice.

Funding Statement

This work was supported by the Department of Clinical Research, University of Southern Denmark, Denmark; Odense University Hospital, Denmark, under Grant A4988; and the Danish foundation, Østifterne, under Grant 2021-0226. The funding agencies had no other involvement.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

In accordance with participants’ written consent, the full data set associated with this research is not available.