Exploring Primary Care Physicians’ Experiences of Language and Cultural Discordant Care for Linguistic Minority Patients at the End-of-Life: A Study Protocol

Abstract

Health disparities exist across different linguistic groups. Language barriers in primary care can negatively affect access to healthcare services and the quality and safety of care at the end-of-life. This study will take a novel, in-depth look at the experience of language- and/or cultural-discordant care for adults from linguistic minority groups through the eyes of primary care physicians providing palliative and/or end-of-life care. Language and cultural discordance means that the physician and patient do not speak the same language or are not from the same cultural background. Qualitative data from primary care physicians (n = 12–24) providing language-discordant end-of-life care to Francophone and/or Allophone older adults across different care models and diverse geographies in Ontario will be collected through semi-structured interviews. Reflexive thematic analysis will be used to report themes within the data and consider the influence of the social locations of the researcher and research participants, geographic considerations impacting service provision, and barriers imposed by differing primary care funding structures on the provision of palliative and end-of-life care for linguistic and cultural minority groups in Ontario. Findings from this study will identify the interconnections among language and cultural discordance, care model, geographic region, and physician perceptions of their combined effects on access to, and quality of, palliative and end-of-life care. This evidence will be key to informing clinical practice guidelines and mobilizing change to improve primary care access and quality for adults at the end-of-life from linguistic and cultural minority populations across Ontario.

Introduction

Effective communication is an important tool for primary care physicians, allowing them to gather detailed patient histories, help patients understand medical information, and support collaborative decision-making in time-sensitive scenarios (Nouri & Rudd, 2015; Ong et al., 1995; Parker et al., 2007). However, communication can become difficult when the physician and patient do not have proficiency in a common language. A physician and patient lacking a shared language is referred to as language discordance (Lor & Martinez, 2020). Culture is closely intertwined with language, which further complicates communication if patients have different values, beliefs, and communication styles from their physicians (Guessabi, 2021; Schouten & Meeuwesen, 2006).

In Canada, more than 9 million people speak a minority language that is not officially recognized in any province or territory (Statistics Canada, 2022). Linguistic minority populations in Canada include Francophones living outside the province of Quebec, Anglophones living in Quebec, and Allophones whose primary language is neither English nor French. Language discordance is a source of disparity in access to healthcare and quality of healthcare services among linguistic minority populations across North America. People experiencing language discordant care are less likely to communicate concerns about their health, less adherent to crucial follow-up care, experience more adverse events related to medication management, and generally report less satisfaction with care (Green & Nze, 2017; Rivadeneyra et al., 2000; Timmins, 2002; Timony et al., 2022). From a health systems perspective, language discordance leads to decreased safety as a consequence of reduced diagnostic confidence and increased use of health care resources through more emergency visits, more diagnostic tests ordered, and longer stays in hospital (John-Baptiste et al., 2004; Ngai et al., 2016; Olsson et al., 2009; Reaume et al., 2022). Negative health outcomes of language discordance have been widely observed in management of asthma, diabetes, cancer, and tuberculosis (Gardam et al., 2009; Manson, 1988; Parker et al., 2017; Silva et al., 2016).

Terminally ill patients belonging to linguistic minority populations are particularly vulnerable to issues related to language and culturally discordant care. A variety of factors contribute to this vulnerability, including age-related communication barriers, difficult conversations around illness, and variable cultural expectations around death (Hancock et al., 2007; Hansson et al., 2018; Slort et al., 2011). Language discordance leads to suboptimal palliative and end-of-life (EoL) care as patients are less likely to die at home, have less adequate symptom control, and experience more emotional distress (Chan & Woodruff, 1999; Kirby et al., 2018). Cultural discordance may also influence decision-making around treatment options and goals of care. Proper navigation of cultural preferences can facilitate effective conversations on prognosis, patient autonomy, and complex topics including the use of opioids, home care, and complementary medicine (Broom et al., 2013; Butow et al., 2010; Green et al., 2018; Hancock et al., 2007; Slort et al., 2011). Proper assessment of pain is a crucial quality-of-life factor that becomes challenging when patients cannot effectively communicate (Chan & Woodruff, 1999; Silva et al., 2016).

In our study province of Ontario, Canada, primary care providers are responsible for delivering nearly three-quarters of palliative/EoL care (Health Quality Ontario, 2016). Yet, research shows that minority language populations experience inequitable access to palliative/EoL care due to the combined effects of difficulties accessing primary care as well as language and cultural barriers with their primary care physician. For example, studies have shown that immigrants from countries where English is not the primary language, were less likely to receive specialist palliative care and more likely to be unaware of their diagnosis (Chan & Woodruff, 1999; Currow et al., 2008). Differences in geographical region is also a substantial barrier, as patients living in rural settings are even less likely to receive palliative care and instead are more likely to use the emergency department and die in an acute care hospital (Conlon et al., 2019). Though a few studies have emphasized language discordance and the poor supply of multilingual health care staff in rural settings, the intersection between geography, palliative/EoL care, and language and cultural discordance in Canada is understudied (Detz et al., 2014; Timony et al., 2016).

Furthermore, the implications of working under different models of primary care in a context where language or culturally discordant care is being provided is not well understood. Ontario has different primary care funding models that influence the degree of incentivization for comprehensive care and to what extent palliative/EoL services are provided. These include fee-for-service (compensation for number and types of medical services delivered), capitation (set compensation for a set roster of patients), and alternative funding plan (contract arranged with hospitals and universities) (Evans et al., 2012; McLeod et al., 2016). There is a stronger incentive in the capitation model in comparison to the others to provide comprehensive care because it is often linked to interprofessional teams, has stipulations that require more comprehensive access, and promotes longitudinal care for chronic disease management and community-based palliative care (Evans et al., 2012). Thus, different care models may influence how and to what extent language and cultural discordance impacts how palliative/EoL care services are delivered (Currow et al., 2008).

A recent population-based study in Ontario, Canada showed that frail home-care patients receiving language discordant care faced significantly higher rates of in-hospital deaths, longer hospital stays, and more adverse outcomes (Seale et al., 2022). However, there is limited research on the complexities of language discordant care in relation to access, quality, and delivery of palliative/EoL care, particularly when comparing different primary care funding models and geographic regions. Likewise, research looking at the interconnections between language and cultural discordance is virtually absent in the Canadian context. To our knowledge, this is the first study to investigate the intersectionality of language, culture, geography, and care model in palliative/EoL care quality and access. The application of the intersectionality theoretical framework, which argues that all experiences of marginalization overlap and reflect macro-level forms of health inequities (Kelly et al., 2021) has never been applied to elicit a better understanding of issues of language and culturally discordance care at the EoL.

Aim and Objectives

The aim of this study is to explore the perspectives of primary care physicians who have experienced language and/or cultural discordance when providing palliative or EoL care to adult patients in Ontario, Canada. The study objectives are threefold: (1) To explore physician perceptions of how language and/or cultural discordant care might impact quality of and access to palliative/EoL care. (2) To compare the experiences of primary care physicians providing language and/or cultural discordant palliative/EoL care across different primary care models. (3) To compare the experiences of primary care physicians providing language and/or cultural discordant palliative/EoL care in different geographic regions across Ontario.

Methods

Study Design

Data will be collected through qualitative interviews of primary care physicians who have experienced language and/or cultural discordance when providing palliative or EoL care to adult patients in Ontario. We will build upon a previous population-based study from XX on language concordance leading to more positive in-hospital outcomes among frail home care patients in Ontario, Canada (Seale et al., 2022). Extending the topic with qualitative interviews from the physician perspective will provide more detailed insight into the complexities of negative health outcomes due to language and cultural discordance, allowing an in-depth analysis of the social contexts of those who experience challenges with providing optimal palliative/EOL care. Research participants will be encouraged to share their living/lived experiences providing care to linguistic minority groups and how this has impacted their ability to provide patients with access to high-quality care at the EoL. An intersectionality health equity lens will be used to guide our analysis. Identifying the complexities inherent in providing language and/or culturally discordant palliative and/or EoL care is an important next step in understanding the trends we are seeing in linguistic discordance research using health administrative data in other settings (John-Baptiste et al., 2004; Reaume et al., 2022; Seale et al., 2022). This work will inform clinical practice guidelines for palliative/EoL care for linguistic and cultural minority patients.

Recruitment

Using a combination of purposive and snowball sampling, we will recruit 12–24 primary care physicians providing palliative and/or EoL care to adult patients in Ontario, Canada. Our goal is to recruit a diverse group of physicians of different sexes/genders, primary languages, race/ethnicities, and practice settings across different geographic regions in the provinces (e.g, urban, suburban, rural, etc.). The inclusion criteria is Ontario-based primary care physicians who provide palliative/EoL care and have experienced language and/or cultural discordance with adult patients living at home or in a long-term care home. Primary care physicians who only provide palliative/EoL care outside of home settings such as in hospices, inpatient units, and emergency department will be excluded from the study because we anticipate that their experiences treating patients living at home versus in these other health care settings may differ. Focusing on one care setting for this study will help reduce confounding factors and allow for more targeted analysis of the complexities of language and cultural discordant care being provided to patients living at home at the EoL. We aim to recruit 1 or 2 physicians working within each of the three care models in each of Ontario’s four geographic regions (e.g., urban, suburban, rural, and Northern/remote).

Recruitment will be completed by email through well-established professional networks of the palliative care clinician-scientists and researchers on the study team. After receiving contact information of physicians who are willing to participate in the study, or who have been recommended by a colleague or participant, we will reach out to more potential participants by email to continue the recruitment process through snowball sampling until data saturation is reached. To reach primary physicians in rural and/or remote regions of Ontario, recruitment emails promoting the study will be sent to physician organizations and palliative care facilities in these areas. Participants will be emailed a copy of the informed consent form for review at least 72 hours before the scheduled interview.

Data Collection

Before their interview, participants will complete a 5-minute demographic survey collecting information on gender, primary language, race/ethnicity, country of birth, educational background, geographic region (postal code), practice facility, among others (Appendix 1). This descriptive data will help us describe the sample and understand the interlinkages between research participants’ social locations and lived experiences.

Semi-structured interviews will be conducted virtually for approximately 1 hour and audio recorded on Microsoft Teams. Interviews will be conducted by a research assistant with experience in conducting qualitative research. In the first two interviews, the research assistant will shadow the principal investigator with extensive experience in qualitative interviews. Audio-recordings will be transcribed verbatim and de-identified by a third-party transcription service. Interviews will be conducted in English or French based on participant preference. The research assistant trained and mentored by the principal investigator in qualitative interviewing will follow an interview guide composed of open-ended questions on language and cultural discordant care, as well as existing resources or strategies to navigate these challenges. The interview guide was developed by the research team in partnership with a linguistics expert, and our patient partner (Appendix 2). The interview guide will be amended on an ongoing basis to ensure that the questions are well understood by participants and relevant to the study objectives. A few example questions are: How does language/cultural discordance impact your daily work with patients receiving at the end of life? Can you describe a situation where language/cultural discordance with a patient complicated your ability to provide good care? What solutions do you or your organization have for resolving issues of language/cultural discordance with patients? The interviewer will complete self-reflexive journal entries following each interview to help ensure rigor through reflexivity and transparency.

Data Analysis

Data will be managed using MAXQDA software (MAXQDA, 2022). Interview transcripts and reflexive journals will be analyzed using Braun and Clarke’s approach to reflexive thematic analysis using inductive theme development (Braun & Clarke, 2022). Inductive analysis will focus on pattern recognition that involves generating initial codes, searching for themes, and defining themes that represent responses within the dataset. The research assistant and principal investigator will group-code two transcripts and then compare and discuss. The research assistant will code the remaining transcripts. The research assistant and principal investigator will then review the coded data and work collaboratively to identify themes. Deidentified verbatim quotes with an accompanying description of the participant’s social location will be used as evidence of dominant themes. Interpretation of the themes will be informed by the Intersectionality-Based Policy Analysis (IBPA) Framework, focusing on contextualization of themes and clarification of the complex relationships between social locations, power, and privilege in the current socio-economic context (Hankivsky et al., 2014). The IBPA Framework is a health equity lens that will allow us to capture and respond to the multi-level interacting forces, factors, power status, and power structures that shape and influence wellbeing (Hankivsky et al., 2014). This will inform our thinking about how language and cultural discordance between primary care physicians and patients might intersect with other equity factors (e.g., sex/gender, race/ethnicity, geographic region, care service model) and the relative power status of these individuals can interact in complex ways that shape patients’ access to, and quality of, palliative/EoL care.

Ethical Consideration

This project has received approval from the XX (project ID XX). During recruitment, all participants will be provided with information on the study and the written informed consent form. Participation is entirely voluntary. There are no medical risks involved in the study. Participants may withdraw from the study at any time without repercussions and their personal information will be permanently deleted and not used in the study. If participants feel uncomfortable with some of the questions asked, or with being audio-recorded, the recording will be stopped at any time and questions may be skipped if the participant is uncomfortable providing a response. Participants may also feel fatigued because of the attention required to complete the interview. Interviews will be limited to 1 hour to reduce fatigue or if necessary, postpone the interview to a more convenient time. All participants will be assigned a code and any names or identifying information will be replaced with an unidentifiable number in the transcript. To maintain confidentiality, all interview recordings, journals, and transcripts will be stored on the XX secure server.

Rigor

Several methods will ensure rigor and trustworthiness of this study. To ensure credibility, the research team includes members of multidisciplinary background: the principal investigator (expert in qualitative research and palliative care), the research assistant (medical student with some experience conducting qualitative research), a caregiver patient partner with lived experience of language and cultural discordant care at the EoL, who will help guide the project’s implementation and assist with interpretation of findings. Appropriate literature review and qualitative methodology training will contribute to the understanding of the research topic and practicalities of interviewing and analyzing transcripts. The interviewers will also engage in reflexive journaling after each interview to ensure attention is paid to reflexivity (Lincoln & Guba, 1986). Journal notes on key codes and feelings during/after the interview will be discussed during bi-weekly research meetings. Once available, results, interpretations and analyses of interview transcripts and journals will be debriefed with collaborating academic stakeholders, consisting of researchers and clinician-scientists studying language and cultural discordance to ensure transferability of the study’s findings with wider community settings. Finally, publication of a protocol paper will help to ensure transparency.

Interpretation

This study is a novel attempt at an in-depth and nuanced exploration of the experiences and perspectives of primary care physicians involved in palliative and/or EoL care for linguistic and cultural minority adult patients, looking specifically at roles of care model and geography in shaping care quality and delivery.

Limitations

The small sample in this qualitative study will not be generalizable to the Canadian population, especially linguistic minority groups and primary care physicians in other provinces who work in different models of care and health system contexts. However, this study will offer an in-depth look at the complexities and intersections of language and cultural discordance care at the EoL in Ontario which has not been done before. Recruitment of physicians from varied geographic areas and care models and obtaining diverse representation from rural or remote areas will likely be challenging due to the high workload pressures and smaller staff sizes of physicians working in these areas. We will leverage our preexisting relationships and reach out to physician organizations and networks to try to ensure diverse recruitment. The study focuses on the experiences of primary care physicians in Ontario and will not collect information from the perspectives of patients, caregivers, and other health care professionals. Research collecting these perspectives is much needed. However, given the inherent difficulties of recruiting participants from these populations, this study will focus first on building relationships with primary care physicians in hopes that they will partner with us on future studies and assist us with recruitment from their patient and caregiver rosters and of their colleagues. This would allow the future exploration of the intersections of language discordance with ethno-cultural discordance and the impacts on palliative/EoL care from a variety of perspectives.

Conclusion

Gaining an in-depth understanding of the complexities and nuances of providing palliative/EoL care to patients from linguistic and cultural minority groups is highly relevant for healthcare professionals, policymakers, and healthcare service researchers who seek to develop solutions for improving patient satisfaction and safety given Canada’s increasing number of immigrants, many from linguistic and cultural minority groups. This study will inform decision-making about the importance of considering physician-patient language concordance at the institutional level when planning healthcare human resources. This information is essential for developing policies and processes that improve access to palliative/EoL care for patients in their primary language across Ontario. Furthermore, sharing a summary of different providers’ experiences, organizational resources in different care settings, and promising practices across Ontario will be particularly helpful for individual physicians who can improve access to palliative/EoL for linguistic minority patients in their communities. Lastly, this research will inform future qualitative and mixed methods research projects looking at the perspectives of other stakeholders involved in palliative/EoL care and will disseminate policy briefs targeting decision makers in government agencies for health, seniors, and Francophone affairs to inform and help shape evolving priorities for language concordance in primary care at the EoL.

Supplemental Material

Supplemental Material - Exploring Primary Care Physicians’ Experiences of Language and Cultural Discordant Care for Linguistic Minority Patients at the End-of-Life: A Study Protocol

Supplemental Material for Exploring Primary Care Physicians’ Experiences of Language and Cultural Discordant Care for Linguistic Minority Patients at the End-of-Life: A Study Protocol by Seung Heyck Lee, Maya Gibb, Sathya Karunananthan, Margaret Cody, Peter Tanuseputro, Sharon Johnston, Claire Kendall, Daniel Bedard, Stéphanie Collin, and Krystal Kehoe MacLeod in International Journal of Qualitative Methods.