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Cultural Considerations for End-of-Life Discussions: A Literature Review

Author(s): Kylie Pollard; Scott Gignilliat; Todd Doyle
Date Authored: May 02, 2019
In Fulfillment of Requirements for Seattle Central College Course AHE330

Summary Statement

The elder and immigrant populations in the United States are growing and that is expected to continue. Coupled with increased life expectancy, an expanding population means a heightened need for end-of-life discussions. Culturally sensitive care and planning are necessary for successful care planning with patients. Providers have a great opportunity to improve access to information for their patients and owe it to them to present this information in a way that is accessible. This means advancing their own understanding of the various cultures and languages they will encounter among their patients.

Research Question

What are the cultural considerations providers should take when approaching end-of-life care discussions?

Purpose of the Research

The purpose of this research study is to compile culturally relevant information and suggest helpful resources for providers who engage in end-of-life discussions with immigrants and patients with Limited English Proficiency (LEP).

Introduction

According to Lopez, Bialik, & Radford (2018) with the Pew Research Center, an estimated 43 million immigrants live in the United States. Of the nation’s total number of immigrants, 10.7 million are undocumented with approximately 140,000 undocumented immigrants living in the Seattle area (Passel and Cohn, 2019). When surveyed, 4 in 10 of foreign-born residents in King County reported that they speak English less than “very well” (King County Hospitals for a Healthier Community, 2018). This number is only a fraction of the number of individuals who may experience limited English language proficiency (LEP) in the United States. Individuals with LEP face language and communication barriers when receiving care. This is concerning in a setting where there are sensitive and often complex medical issues discussed, such as death and dying. The concern increases when patients are not met with cultural humility throughout their care continuum, particularly during the final stages of life. 

Methods 

Information on this research topic was obtained through searches in multiple scholarly databases. Databases queried include Google Scholar, EBSCOhost, PubMed, PubMed Central, ProQuest, and others available to students via Seattle Central College’s library catalogs. Searches were completed via scholarly databases online (via Internet) and utilized the following key terms: “palliative care for immigrants,” “palliative care for unauthorized immigrants,” “palliative care for undocumented immigrants,” “barriers to healthcare,” “end of life care for immigrants,” “end of life care for undocumented immigrants,” “end of life care for unauthorized immigrants,” “barriers to healthcare for immigrants,” “cultural death rituals,” “cultural attitudes death and dying,” “immigrant statistics,” “immigrants in Seattle,” “immigrants living in Washington State,” among other similar search terms. Quotation marks and Boolean terms such as “and” and “or” were utilized to narrow, broaden, or complete search results as needed. MeSH terms were rarely if ever, utilized during these searches. Results were limited to include only those that were considered scholarly sources.

Results & Limitations 

Over 75 potentially useful articles were found using the above search phrases and techniques. Of those, 20 were chosen for review in this study. Not all articles which may have been useful were included in the review process due to time constraints and access limitations. Some articles that appeared to be useful when reading their abstracts were not reviewed for this study due to the full-text version being unavailable. Articles that were chosen represented populations of patients that were described as Chinese American, Samoan, Filipino, Japanese, Micronesian, Hawaiian, Chinese, and Latino. 

Several types of bias, from authors of reviewed studies, as well as the authors of this study, pose as limitations. Other limitations of this research include the non-systematic selection of scholarly articles and the non-exploration of all potentially useful articles as a result of time constraints. The findings of this research are limited by the mixed populations studied in many of the articles. 

The Increasing Elder and Immigrant Population

According to Healthy People (2018), the U.S. population of people aged 65 or older was 46.3 million (14.5% of the population) in 2014 and is projected to reach 98 million (23.5%) by the year 2060. Aging adults experience a higher risk of chronic disease, with 60% of older adults managing 2 or more chronic conditions in 2012 (Healthy People, 2018). This means the need for end-of-life care options is increasing at a rapid rate and discussions regarding end of life must become more routine to serve this population of patients better. By the year 2030, net international migration is projected to surpass “natural increase” as the highest source of population growth (Vespa, Armstrong, & Medina, 2018). Of the 44 million people migrating to the United States between 2000 and 2017, 13 million identified as foreign-born (King County, 2017). Within King County alone, the foreign-born community has been growing from 15.4% of the total population in 2000 to 21.1% of the population in 2014, and 23.6% of the population in 2017 (King County, 2017). With this data in mind, it is imperative that healthcare providers consider how they can better serve the patients in their respective communities. End-of-life discussions are not only for the terminal, do not fall under a specific specialty, and should, therefore, be a standard of care in all practices.

An increase in the number of immigrants arriving in the U.S. means an increase in the number of languages other than English spoken in the U.S. The U.S. Census Bureau (2013) reported that, as of 2013, 21% of the entire U.S. population spoke a language other than English at home, with 62% of that population speaking Spanish and Spanish Creole. The second most common non-English language spoken at home, by 5% of the population, was Chinese. It was not specified by the U.S. Census Bureau which dialect of Chinese was spoken when this information was reported (Ryan, 2013). At least 380 languages are being spoken in the United States (U.S. Census Bureau, 2015), which points to an increased need for the use of trained medical interpreters and providers who speak and understand languages other than English. 

Barriers to Care 

Immigration status, documentation status, and the ability to speak English play a significant role in the ability of immigrants to access healthcare. The 1996 Illegal Immigration Reform and Immigrant Responsibility Act (IIRIRA) and the 1996 Personal Responsibility and Work Opportunity Act (PRWORA) have made immigrants of any documentation status more vulnerable to deportation, resulting in fear of deportation itself manifesting as a barrier to healthcare (Joseph, 2017). Not even provisions from the 2010 Affordable Care Act, which only expanded to cover adult U.S. citizens, long-term Legal Permanent Residents (LPR), and Temporary Protected Status (TPS) immigrants under Medicaid expansion, have helped ease the struggle to access healthcare for immigrants (Capps & Fix, 2013). Medicaid expansion was decided by each individual state and did not require a specific policy to be adopted, allowing each state to decline many coverages and conditions that are necessary for immigrants to have access to healthcare (U.S. Centers for Medicare and Medicaid Services, 2018).  

Immigrants make up 30% of the uninsured population in the U.S. (Bustamante & Van der Wees, 2012). Health complications in immigrant patients may evolve into life-threatening diseases or sources of pain and disability if they are unable to access health insurance and health care (Joseph, 2017). Immigrants have far fewer resources, such as health insurance and supportive care services, available to them than non-immigrants, and undocumented immigrants have almost no resources available to them (Nuila, 2012). Should an individual and/or their family attempt to utilize resources, they are often met with challenges stemming from language barriers, a lack of knowledge of the healthcare system they are attempting to navigate, cultural inconsistencies and misunderstanding, and racism that results in a lower quality and extent of care (Isenberg, Aslakson, & Smith, 2017). Financial burden from such care can bring ruinous consequences to the person in question and their family, restricting them to a low quality of life and low social mobility in the case of those who are able to stay in the U.S. Alternatively, they face voluntary or involuntary deportation to their home country, which could still leave them with few to no resources for care (Metchnikoff, Naughton, & Periyakoil, 2018).  

The United States healthcare system serves diverse patient populations reflecting a broad range of cultures, backgrounds, languages, and identities. This results in barriers to care that include but are not limited to: differences in cultural perception of illness and disease, language differences, as well as prejudices and assumptions (Paternotte, Dulmen, Lee, Scherpbier, & Scheele, 2015). It has been reported that racially discordant interactions resulted in poor communication, including physicians providing significantly less information and patients being significantly less active in the visit (Isenberg, Aslakson, & Smith, 2017).

Racially discordant interactions are only one aspect of the problem. When there is a language barrier between the provider and the patient, the problems are further complicated. According to Ngo-Metzger et al. (2007), language and racially discordant interactions between patients and providers lead to less patient education and poorly rated interpersonal care. Additionally, patients with limited English proficiency (LEP) have difficulty learning about other resources of care due to language barriers (Metchnikoff et al., 2018). 

Issues surrounding death-and-dying can be complicated for any patient and their family to process and can be even more stressful when having to navigate end of life care in a new country. According to Tilden (1999), there are strong cultural influences on end-of-life plans and preferences. In fact, a provider in a U.S. hospital may perceive a non-American patient as being non-compliant with a care plan when a patient is following traditional customs from their homeland (Ko & Turner, 2017). Providers must practice cultural sensitivity when caring for immigrants in order to learn the best ways to develop trust and rapport with their patients and increase care outcomes.

Cultural Differences and Best Care Practices

The topic of cultural humility within end-of-life care is important because it can improve patient care. In a study conducted by Fischer, Cervantes, Fink, and Kutner (2015), it was shown that displaying culturally responsive care can improve palliative care outcomes, including better pain management. Additionally, Metchnikoff et al. (2018) proposed that improving communication would allow for better care planning and avoidance of unnecessary hospital stays or procedures. Proper resource utilization is important when considering a rapidly expanding population. To circumvent possible barriers, Isenberg, Aslakson, and Smith (2017) made the recommendation in their study for patients to be referred to an interdisciplinary palliative care team for palliation rather than the patient’s primary care team. Standardizing this practice would be one option to consider as the need for end-of-life care increases.

Professional Interpreters 

A systematic review conducted by Silva et al. (2015) highlights the importance of the use of professional interpreters to improve symptom management for LEP patients. When hospital interpreting services are not used, patients experience poor symptom management and have an inadequate understanding of their diagnosis (Silva et al., 2015). The lack of interpreter use in hospitals is concerning when complex medical issues and sensitive issues exist, such as death-and-dying. This issue becomes more confounded when these patients are not met with cultural humility throughout their care continuum, particularly during the final stages of life.

However, using interpreter services may not be enough to bridge the cultural gap. In the book, The Spirit Catches You and You Fall Down by Anne Fadiman (1997/2012), a care team was faced with many challenges throughout the care and up to the death of a young Hmong child. Fadiman captures what happens when there is a fundamental divide between one's care team and one's own cultural practices. Even with the help of interpreting services, there was a relay of misconstrued information that resulted in a failure to provide culturally appropriate care. In her book, Fadiman (2012) mentions, "In the Hmong moral code, foretelling a death is strongly taboo" (p. 177). Discussing death is also taboo in Chinese culture, as it is considered an omen of bad luck (Yick, A.G. & Gupta, R., 2002). This "moral code" was overlooked by the doctor and proved to be an apparent lack of cultural sensitivity.

AAFP Cultural Proficiency Guidelines

The American Academy of Family Physicians (AAFP) has published cultural proficiency guidelines and policy and advocacy statements about diversity (AAFP, 2003). In the AAFP's policy statement on ethical principles for end-of-life care (2002), principle five states, "Care at the end-of life-should recognize, assess, and address the psychological, social, spiritual or religious issues, and cultural taboos realizing that different cultures may require significantly different approaches." While many institutions and companies have adopted similar policies, the potentially positive effects will not be felt by patients until their providers start adopting the policies into their daily practice. Cultural competence training is already required in the United States for practitioners in medical school (Aggarwal, N., Cedeno, K., Guarnaccia, P., Kleinman, A., & Lewis-Fernandez, R., 2016), but the training needs to be accompanied by behavioral change in the providers. This will require a high amount of self-reflection, open-mindedness, and willingness to accept one's personal biases. It will require feedback and suggestions from patients. A study by Aggarwal, et al. (2016) stated that providers may benefit from role-specific training over an annual lecture training. It will require training on how to best apply these guidelines. While certain styles of communication and decision-making are common in the U.S., such as prolonged autonomy through advance directives, they are viewed as isolating by other cultures (Searight & Gafford, 2005). One accessible technique a provider can use to begin showing cultural empathy is to express genuine interest in the patient’s cultural influences and beliefs when building rapport with them.

Communication 

In the United States, it is common for physicians to communicate directly and openly, informing patients of their illnesses in the most specific way possible. Many cultures outside of the U.S. have differing opinions regarding the best approach to communication. For example, it is common for practitioners, like those in Japan and parts of Africa, to conceal diagnoses from patient by using indirect language to describe their condition, such as “growth,” “mass,” “blood disease,” or “unclean tissue” rather than stating a specific terminal illness (Searight & Gafford, 2005). In the same study, it was noted that some Hispanic, Chinese, and Pakistani communities and family members actively protect terminally ill patients from knowledge of their condition. Because cultures can vary drastically, practitioners should avoid stereotyping or making assumptions about a patient’s cultural practices. In a study by Chi, Cataldo, Ho, and Rehm (2018) that involved 14 Chinese Americans over the age of 55, 9 of their children, and 7 of their healthcare providers, every participant stated they preferred providers use indirect methods of communication rather than direct questioning in order to initiate end-of-life discussions. Other methods for indirect communication mentioned included: integrating questions about advance care planning into check-in paperwork, initiating a conversation by using another person’s experience as an example, framing the questions as a standard in the policy for all patients, and asking for permission to speak about the topic (Chi et al., 2018). 

Consent

Asking for permission to provide care is imperative to informed consent. Truly informed consent can only be achieved by ensuring the patient is able to understand the conversation in a way that is accessible to them. Discussions about medical issues and end-of-life care are extremely sensitive in nature and must be handled delicately and respectfully. Therefore, practitioners can provide the best care to their patients by being informed of the most culturally appropriate techniques available and learning to practice them routinely. A study by Dehning, et al. (2013) described empathy in medicine as, “crucial to the physician-patient relationship and thus an important part of medical education.” They noted that empathy represents the “touch” in modern medicine. 

Non-Verbal Communication 

Helen Riess, director of Massachusetts General Hospital’s empathy and relational science program, states it is imperative that providers help patients feel comfortable by providing them with the opportunity to explain their concerns (Advisory Board, 2015). Alternatively, providers can take the opportunity to ask about a patient’s family to help build rapport. Riess helps run a training program that assists providers in building up their non-verbal communication skills (Massachusetts General Hospital, 2018). A study by Riess, Kelley, Bailey, Dunn, and Phillips (2012) states, “Empathic communication skills are associated with increased patient satisfaction, improved adherence to therapy, decreased medical errors, fewer malpractice claims, better outcomes, decreased burnout, and increased physician well-being.” Riess performed a randomized controlled trial of her methods, which showed that providers could be taught to be more empathetic (Riess et al., 2012). The details of these interventions were not readily available and are likely proprietary information. However, it was mentioned in Riess' study that the training was comprised of three 60-minute modules spaced over four weeks, delivered to groups of 6-15 medical residents in the same specialty (Riess et al., 2012). The training protocol included the student participants watching videos of their clinical interactions which allowed them to see the physiological concordance or discordance between themselves and their patients. Doing this also allowed the students to see the degree to which they and their patients were physiologically activated by challenging attitudes such as arrogance, entitlement, or dismissive behaviors (Riess et al., 2012). Decoding facial emotions was also part of the training, though the specific methodology was not explained. The study’s findings showed that providers who went through the training were perceived as more empathic by their patients and were better able to decode subtle facial expressions of emotion (Riess et al., 2012).

Diversity Practices

As the diversity of cultures in the United States continues to grow, there also needs to be a simultaneous increase in awareness of how to properly communicate with and care for a culturally rich patient population. When providing care to an immigrant, healthcare providers should try to learn some of the nuances of healthcare delivery within a patient’s identified culture. Many East Asian patients will not want to openly discuss the issue of death as they view it as being an omen (Martin and Barkley, 2016). In some cultures, all decisions are to be made as a family or approved by the elders, which is different than most Americans, who are used to taking a more autonomous role in their health (Martin and Barkley, 2016). Additionally, some cultures rely on traditional healing methods such as acupuncture, coining, cupping, moxibustions, and other herbal remedies (Martin and Barkley, 2016). Some facilities in the U.S. offer “integrative” or “functional” medicine as a way to incorporate other therapies, but these treatments are still not widely accepted as the national standard of care.

Conclusion

Mitchell (2017) states, “End-of-life care […] should be anticipated months or sometimes years ahead through advance care planning […] by the patient’s clinical team, as well as by patients and their main caretakers, to manage crises as they arise rather than react to them once they arise.” It is of the utmost importance for healthcare workers, particularly providers, to have the skills necessary to communicate with their patients appropriately. The number of patients requiring end-of-life care will continue to increase. Successful management of their care will depend upon culturally competent providers to help them navigate end-of-life decisions via empathic discussion. 

Appendix / Table

Annotated Synthesis Matrix of Articles 

References

Advisory Board (n.d.). Here’s how some hospitals are teaching doctors empathy. Retrieved December 3, 2018, from http://www.advisory.com/daily-briefing/2015/06/30/heres-how-some-hospitals-are-teaching-doctors-empathy

Aggarwal, N. K., Cedeño, K., Guarnaccia, P., Kleinman, A., & Lewis-Fernández, R. (2016). The meanings of cultural competence in mental health: an exploratory focus group study with patients, clinicians, and administrators. SpringerPlus, 5(1), 384. https://doi.org/10.1186/s40064-016-2037-4

American Academy of Family Physicians. Positions and policies: cultural proficiency guidelines (2003).

American Academy of Family Physicians. Positions and policies: ethics, core principle for end-of-life care, principle 5 (2002).

Bustamante, A. & Van der Wees, P. (2012). Integrating immigrants into the U.S. health system. AMA Journal of Ethics. 14(4), 318-323. DOI: 10.1001/virtualmentor.2012.14.4.stas1-1204.

Capps, R. & Fixx, M. (2013). Immigration reform: A long road to citizenship and insurance coverage. Health Affairs, 32(4), 39-42.

Chi, H.L., Cataldo, J., Ho, E. Y., & Rehm, R. S. (2018). Please ask gently: Using culturally targeted communication strategies to initiate end-of-life care discussions with older Chinese Americans. The American Journal of Hospice & Palliative Care, 35(10), 1265–1272. https://doi.org/10.1177/1049909118760310

Dehning, S., Gasperi, S., Tesfaye, M., Girma, E., Meyer, S., Krahl, W., Riedel, M., Moller, H.J., Muller, N., Siebeck, M. (2013). Empathy without borders? Cross-cultural heart and mind-reading in first-year medical students. Ethiopian Journal of Health Sciences, 23(2), 113–122.

Fadiman, A. (2012). The spirit catches you and you fall down. New York, NY: Farrar, Straus and Giroux. (Original work published in 1997)

Fischer, S., Cervantes, L., Fink, R. M., & Kutner, J. S. (2015). Apoyo con cariño: A pilot randomized controlled trial of a patient navigator intervention to improve palliative care outcomes for Latinos with serious illness. Journal of Pain and Symptom Management, 49(4), 657–665. https://doi.org/10.1016/j.jpainsymman.2014.08.011

Healthy People 2020. (n.d.). Older adults. Retrieved December 3, 2018, from https://www.healthypeople.gov/2020/topics-objectives/topic/older-adults#1

Isenberg, S. R., Aslakson, R. A., & Smith, T. J. (2017). Implementing evidence-based palliative care programs and policy for cancer patients: epidemiologic and policy implications of the 2016 American Society of Clinical Oncology clinical practice guideline update. Epidemiologic reviews, 39(1), 123-131.

Joseph, T. (2017) Falling through the coverage cracks: How documentation status minimizes immigrants’ access to health care. Journal of Health Politics, Policy and Law, Vol. 42. Doi: 10.1215/03616878-3940495

King County (2017). Demographic trends of king county. Retrieved December 3, 2018, from https://www.kingcounty.gov/independent/forecasting/King%20County%20Economic%20Indicators/Demographics.aspx

King County Hospitals for a Healthier Community. (2018). King County Community Health   Needs Assessment 2018/2019 (Rep.). Retrieved February 25, 2019, from Public Health                        Seattle & King County website: https://kingcounty.gov/depts/health/data/community- health-indicators/~/media/depts/health/data/documents/2018-2019-Joint-CHNA-Report.ashx

Ko, A. & Turner, J. (2017). Culturally sensitive care for asian immigrants: Home healthcare perspectives. Home Healthcare Now, 35(9), 507-513. doi:10.1097/nhh.0000000000000608

Lopez, G., Bialik, K., & Radford, J. (2018) Key findings about U.S. immigrants. Pew Research Center.

Martin, E. & Barkley, T. (2016). Improving cultural competence in end-of-life pain management. Nursing, 46(1), 41-42. doi:10.1097/01.nurse.0000479414.68153.8f

Massachusetts General Hospital (n.d.). Helen Riess: Research & publications. Retrieved April 16, 2019 from https://www.massgeneral.org/doctors/doctor.aspx?id=16758#

Metchnikoff, C., Naughton, G., Periyakoil, V.S. End-of-life care for unauthorized immigrants in the U.S. Journal of Pain & Symptom Management. 2018;55(5):1400-1407. doi:10.1016/j.jpainsymman.2018.01.012.

Mitchell, G. (2017). Rapidly increasing end-of-life care needs: a timely warning. BMC Medicine, 15. https://doi.org/10.1186/s12916-017-0897-2

Ngo-Metzger, Q., Sorkin, D., Phillips, R., Greenfield, S., Massagli, M., Clarridge, B., & Kaplan, S. (2007). Providing high-quality care for limited English proficient patients: The importance of language concordance and interpreter use. Journal of General Internal Medicine, 22(2), 324-330. doi: 10.1007/s11606-007-0340-z

Nuila, R. (2012). Home: Palliation for dying undocumented immigrants. New England Journal of Medicine, 366(22), 2047–2048.

Passel, J. S., & Cohn, D. (2019). Most U.S. unauthorized immigrants live in just 20 metro areas. Retrieved from http://www.pewresearch.org/fact-tank/2019/03/11/us-metro-areas-unauthorized-immigrants/

Paternotte, E., Dulmen, S., Lee, N., Scherpbier, A., & Scheele, F. (2015). Factors influencing intercultural doctor–patient communication: A realist review. Patient Education and Counseling, 98(4), 420-445. doi:10.1016/j.pec.2014.11.018

Riess, H., Kelley, J. M., Bailey, R. W., Dunn, E. J., & Phillips, M. (2012). Empathy training for resident physicians: A randomized controlled trial of a neuroscience-informed curriculum. Journal of General Internal Medicine, 27(10), 1280–1286. https://doi.org/10.1007/s11606-012-2063-z

Ryan, C. (2013). Language use in the United States: 2011. U.S. Census Bureau.

Searight, H. R. & Gafford, J. (2005). Cultural diversity at the end of life: Issues and guidelines for family physicians. American Family Physician, 71(3), 515–522.

Silva, M. D., Genoff, M., Zaballa, A., Jewell, S., Stabler, S., Gany, F. M., & Diamond, L. C. (2015). Interpreting at the end of life: A systematic review of the impact of interpreters     on the delivery of palliative care services to cancer patients with limited English           proficiency. Journal of Pain and Symptom Management, 51(3), 569-80

Tilden, V. (1999). Ethics perspectives on end-of-life care. Nursing Outlook, 47(4), 162-167. doi:10.1016/S0029-6554(99)90091-X

U.S. Census Bureau. (2015). Census bureau reports at least 350 languages spoken in U.S. homes. U.S. Census Bureau.

U.S. Census Bureau (2013). Detailed languages spoken at home and ability to speak English. Retrieved December 3, 2018, from https://www.census.gov/data/tables/2013/demo/2009-2013-lang-tables.html

U.S. Centers for Medicare and Medicaid Services. (2018). Coverage for lawfully present immigrants. U.S. Centers for Medicare and Medicaid Services.

Vespa, J., Armstrong, D., & Medina, L. (2018). Demographic turning points for the United States: Population projections for 2020 to 2060. U.S Census Bureau. 

Yick, A. G., & Gupta, R. (2002). Chinese cultural dimensions of death, dying, and bereavement: Focus group findings. Journal of cultural diversity9(2), 32.