Cultural Sensitivity in End-of-Life Discussions in the Intensive Care Unit
July 1, 2023
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By Elaine Chen, MD
Associate Professor, Department of Internal Medicine, Division of Pulmonary and Critical Care Medicine, Section of Palliative Medicine, Rush University Medical Center, Chicago
Death remains a common occurrence in the intensive care unit (ICU). The memory of a patient dying in the ICU often is the last picture and memory that a family has of their loved one. Sometimes this occurs after a prolonged, complex ICU stay; other times, death may sweep in quickly and unexpectedly. Either way, factors about that final encounter, the time leading up to it, and the time afterward can significantly affect a family in their closure and grieving. As clinicians, our interactions and communication with patients and families near the end of life play an important part. In particular, when clinicians treat patients and communicate with families who come from cultures that are different from their own, cultural sensitivity can improve the experience for families. This Special Feature article will review literature on why cultural sensitivity matters in the peri-mortem period and apply evidence-based strategies to optimize these interactions.
Post-Traumatic Stress Disorder and Anxiety After ICU Death
After a patient dies in the ICU, family members are at increased risk of psychological distress and psychiatric illness. This may manifest as symptoms of post-traumatic stress disorder (PTSD), depression, anxiety, and complicated grief. This spectrum of symptoms has significant overlap based on varying definitions and measurement tools and has been studied in both family members of ICU survivors as well as non-survivors. In three separate studies in the United States, Taiwan, and France, withdrawal of life support was cited as protective against psychological symptoms.1-3 Additionally, family satisfaction with ICU care and communication was cited as associated with decreased risk. It should be noted that in the U.S. study, more than 80% of the decedents were white. Taiwan has a very homogeneous ethnic culture, and race/ethnicity was not included in the French study. Another caveat to note is that post-mortem survey data are limited by subjects who are willing to complete the surveys.
Disparities in Outcomes
The importance of culturally sensitive discussions near the end of life is highlighted by literature describing disparities in ICU outcomes between white and non-white patients. In a systematic review by McGowan et al, race-based disparities in the delivery of palliative care at the end of life in the ICU were highlighted.4 Specifically, racial minorities were more likely to receive higher intensity of care at the end of life, which is only partially explained by socioeconomic status. Non-white patients and families were shown to be less engaged in advance care planning, which may explain a preference for life-extending care in these groups. Additionally, non-white patients were less likely to undergo withdrawal of mechanical ventilation or compassionate extubation. This review highlighted differences between white and non-white patients in the United States, but it was unable to distill this more granularly into different racial, ethnic, or immigrant groups by nature of its methodology. With immigrant populations, further linguistic and cultural barriers may heighten these disparities. Interestingly, a cohort study by Mendu et al found improved survival in patients whose first language was not English.5
Racism and the Unspoken Culture of Medicine
Healthcare professionals and physicians, in particular, come from a highly educated culture. That education often leads to a more formal style of communication. The institutions that we practice in and have been trained in are traditionally white-influenced, where white privilege is prevalent, although it may not be expressly acknowledged.6 Racism in medicine may be overt or implicit, systemic or individual, but its legacy from generations past contributes to a lack of trust in the healthcare system.4 The language of science and medicine is taught to be concrete, direct, detailed, straightforward, and explicit. Clinicians are taught on rounds to be simple and clear and to speak in a specifically organized fashion. This direct style of communication also may be described as low-context communication, in contrast to a more indirect or high context style of communication.
High-context and low-context cultural communication are terms that describe different styles of communication used in various cultures.7,8 Anthropologist Edward Hall described and studied these concepts in his writings over the decades, notably in Beyond Culture, published in 1977. Low-context cultures tend to emphasize direct, explicit communication in contrast to high-context cultures that tend to emphasize implicit and indirect communication. It is more of a continuum than a dichotomy, and the comparisons are relative to the two parties involved, rather than absolute differences.
To be dichotomous, low-context communication can be described as more of an exchange of information. Words are specific, detailed, precise; the speaker assumes responsibility for relaying the words in a straightforward and explicit fashion, leaving no room for interpretation. Repetition may be used to ensure clarity, and good communication is simple and clear.
Conversely, high-context communication favors building relationships, with concepts such as the history of the relationship, the environment, nonverbal cues including actions and gestures, timing, and group norms as important components of communication. The speaker’s true intention may not be revealed in the words that are used, but it becomes the listener’s responsibility to “read between the lines.” Such communication may seem, to lower context communicators, to be roundabout, with many generalizations leading to specificity; what is unsaid may be more important than the actual words. High-context communicators consider good communication to be nuanced and layered, rather than simple and direct.
Because of their differences in style and preference, high-context and low-context communicators may struggle with frustration and judgment when speaking with each other. Low-context communicators may perceive high-context communicators as being secretive or dishonest or not putting forth enough effort to clarify their communication, whereas high-context communicators may perceive low-context communicators as brusque, rude, abrupt, offensive or insensitive, superficial, and not nuanced enough in their delivery and word choice.
Religion can play an important part in the cultural context of patient and family experiences. The American medical establishment is heavily rooted in Judeo-Christian traditions, which may be perceived by many healthcare providers, implicitly or explicitly, as the norm or baseline. Even within these traditions, there lies significant variability in how faith and religion is interpreted and practiced, with a wide spectrum between the most devout and orthodox and the more secular. Other less prominent religions, including but not limited to Islam, Hinduism, and Buddhism, may have very different value systems, belief structures, religious practice, and rituals.9-12 For some cultures, there may be a blurring of cultural or ethnic practices vs. religious practices. Families may bring up their desire for and strong belief in a “miracle” that is to come.13,14
Practical Steps to Optimizing Cultural Sensitivity
In considering the myriad cultural concepts that may be at play for patients and families in a stressful situation with a patient near the end of life in an ICU, cultural sensitivity is imperative to help families feel respected and honored. Cultural and religious beliefs, values, and practices may need to be considered. It is important for us to communicate with patients and families in a way that builds trust and helps families feel heard and respected.
General communication principles and evidence-based tools and methods for speaking and listening should be applied. We should assess our own styles, preferences, preconceptions, and triggers by asking ourselves some questions: Are we as clinicians direct and low-context communicators as we have been trained to be in the medical setting? Are there anticipated communication differences? Is there an anticipated mismatch in communication styles? Are there underlying trust issues that may lead to disparities and differences?
We should start by looking at our own background, culture, religion, social, and economic forces that drive our worldview.15-17 Here, I share several of my own cultural identities: I am Taiwanese-American, Midwestern, urban, and Christian. I am a female physician, educated in the United States, proficient in Mandarin, with immigrant parents who are fluent in English. We must then also assess those same factors, considering how they may drive our patient and their family, who may have evolving cultural contexts. We should take some time to try to understand and respect the cultural and religious beliefs of our patients and their families and learn about the personal factors that influence their value-based decision-making styles.13,14 Is there involvement of a hospital chaplain that can help or would it be more helpful to involve a religious leader from the patient’s community? Do we need to involve or even un-involve certain members of the family? It is important to assess whose culture is being respected, especially as a “sandwich generation” patient may have a spouse/partner as well as parents, siblings, and children with different cultural and communication needs.
The importance of listening cannot be stressed enough. Families in the ICU express greater satisfaction with family meetings in which they have the opportunity to speak more and in which the clinician has a relatively lower percent of speaking time.18 This may be of particular importance with high-context communicators, and clinicians should practice the act of being an indirect listener. This includes not taking words at face value, but paying attention to factors such as body language, nonverbal cues, and metaphors. Clinicians should determine if there is a critical mismatch in communication style and learn to flex their style to accommodate patients and their families. It may include an explanation of your own direct communication style, asking for permission to be direct or asking the listener to express if and when they find your style of communication offensive. Learning to be a more indirect speaker also may help when a low-context communicator is communicating with a more high-context communicator, which can include such strategies as flexing away from needing the precision of words to carry a message but rather providing additional context, aligning actions and nonverbal cues with the message, focusing on the subtext of the message, and finding common ground.
In addition to assessing communication styles, clinicians should ask about other factors that may influence a patient and family’s context, such as their location of origin, religious background, and important life history milestones. If hope in miraculous healing is at the forefront of a family’s context, important steps to take may include searching for common ground, assessing understanding, reviewing the meaning of the word “miracle,” honoring one’s faith, and allowing hope for a miracle.14 Clinicians should continuously work to establish, encourage, and sustain the trust of the patient’s family through emphasizing non-abandonment, reframing meaning, and acknowledging unknowns.13 In settings of linguistic differences, interpreters, especially in-person interpreters, should be used as much as possible with patients and families who have a non-English primary language. Interpreters have been shown not only to interpret the medical information but also to serve as health advocates and cultural brokers, incorporating cultural nuances in their transfer of information.19 Families should be allowed opportunities to participate in care of their loved ones, such as offering sensory experiences and other rituals, which have been shown to reduce symptoms of PTSD and improve family satisfaction.20
Losing a loved one in an ICU puts families at risk for psychological distress. There are many factors that may increase the risk of PTSD, anxiety, and depression. Cultural factors such as language, country of origin, religion, generation, and education may affect family perceptions in the peri-mortem period in the ICU. As clinicians, we should strive to assess our own cultural biases and evaluate cultural factors that may affect families’ communication, understanding, trust, and decision-making. We should aim to flex our communication style to help families feel at ease during a time of extreme stress and grief, in hopes of decreasing the psychological distress they may experience.
- Kross EK, Engelberg RA, Gries CJ, et al. ICU care associated with symptoms of depression and posttraumatic stress disorder among family members of patients who die in the ICU. Chest 2011;139:795-801.
- Tang ST, Huang CC, Hu TH, et al. End-of-life-care quality in ICUs is associated with family surrogates’ severe anxiety and depressive symptoms during their first 6 months of bereavement. Crit Care Med 2021;49:27.
- Kentish-Barnes N, Chaize M, Seegers V, et al. Complicated grief after death of a relative in the intensive care unit. Eur Respir J 2015;45:1341-1352.
- McGowan SK, Sarigiannis KA, Fox SC, et al. Racial disparities in ICU outcomes: A systematic review. Crit Care Med 2022;50:1-20.
- Mendu ML, Zager S, Moromizato T, et al. The association between primary language spoken and all-cause mortality in critically ill patients. J Crit Care 2013;28:928-934.
- Romano MJ. White privilege in a white coat: How racism shaped my medical education. Ann Fam Med 2018;16:261-263.
- Hallenbeck J. High context illness and dying in a low context medical world. Am J Hosp Palliat Med 2006;23:113-118.
- Yeh I, Hsin G. Moving beyond “Tell me more”: Level up your approach to cross-cultural interactions (VF205). J Pain Symptom Manage 2022;63:841-842.
- Clarfield AM, Gordon M, Markwell H, Alibhai SMH. Ethical issues in end-of-life geriatric care: The approach of three monotheistic religions—Judaism, Catholicism, and Islam. J Am Geriatr Soc 2003;51:1149-1154.
- Leong M, Olnick S, Akmal T, et al. How Islam influences end-of-life care: Education for palliative care clinicians. J Pain Symptom Manage 2016;52:771-774.e3.
- Deshpande O, Reid MC, Rao AS. Attitudes of Asian-Indian Hindus toward end-of-life care. J Am Geriatr Soc 2005;53:131-135.
- Masel EK, Schur S, Watzke HH. Life is uncertain. Death is certain. Buddhism and palliative care. J Pain Symptom Manage 2012;44:307-312.
- DeLisser HM. A practical approach to the family that expects a miracle. Chest 2009;135:1643-1647.
- Orr RD. Responding to patient beliefs in miracles. South Med J 2007;100:1263-1267.
- Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life: “You got to go where he lives.” JAMA 2001;286:2993.
- Nakagawa S. Communication—The most challenging procedure. JAMA Intern Med 2015;175:1268.
- Levin PD, Sprung CL. Cultural differences at the end of life. Crit Care Med 2003;31(5 Suppl):S354.
- McDonagh JR, Elliott TB, Engelberg RA, et al. Family satisfaction with family conferences about end-of-life care in the intensive care unit: Increased proportion of family speech is associated with increased satisfaction. Crit Care Med 2004;32:1484.
- Suarez NRE, Urtecho M, Jubran S, et al. The roles of medical interpreters in intensive care unit communication: A qualitative study. Patient Educ Couns 2021;104:1100-1108.
- Amass TH, Villa G, OMahony S, et al. Family care rituals in the ICU to reduce symptoms of post-traumatic stress disorder in family members—A multicenter, multinational, before-and-after intervention trial. Crit Care Med 2020;48:176-184.
When clinicians treat patients and communicate with families who come from cultures that are different from their own, cultural sensitivity can improve the experience for families.
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