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Cultural aspects of palliative care

Cultural aspects of palliative care
Authors:
Elise C Carey, MD
Michael J Sadighian, MD, MAS, MSc
Rebecca L Sudore, MD
Section Editor:
Robert M Arnold, MD
Deputy Editor:
Jane Givens, MD, MSCE
Literature review current through: Dec 2022. | This topic last updated: Aug 26, 2022.

INTRODUCTION — Optimal care for seriously ill patients should be individualized; reflect each patient’s preferences, hopes, and values; and be shaped by each patient’s unique physical, emotional, social, spiritual, and cultural needs. Culture shapes one’s experience of illness and death in clinically meaningful ways.

Culture is a broad concept that encompasses aspects of an individual’s person’s experience, such as socioeconomic status, race, ethnicity, identity, norms, traditions, beliefs, and habits. Culture may apply to some groups broadly or apply to individuals in unique ways. To provide effective care while avoiding stereotyping, clinicians need tools and skills for approaching patients in a culturally appropriate manner. Becoming familiar with commonly encountered attitudes, beliefs, and norms among different groups can serve as a starting point for clinicians wishing to provide culturally appropriate care to individual patients. A clinician must be willing to learn about patients’ cultural backgrounds while maintaining a humble curiosity about how each individual patient does and does not represent the dominant values of their cultural traditions. Clinicians must do all of this while also being aware of their own background assumptions, personal and professional, both of which are shaped by culture.

This topic will address several components of culture and offer practical advice regarding the provision of culturally appropriate palliative and end-of-life care. Throughout this topic, we have endeavored to use consistent terminology in discussing socially constructed and politically charged terms, such as race, regardless of the term chosen in the individual studies discussed. We use the term “White” when discussing people who identify themselves as non-Hispanic Whites, European American, or of European ancestry. We use the term “Black” when discussing people who identify themselves as Black, African American, or of African ancestry. We use the terms “Native American,” “Hispanic,” and “Asian” to describe individuals who identify with each of those communities. When particular countries, regions of origin, religious backgrounds, or other sociocultural details are relevant, we describe those specifically (eg, Chinese American or Black Caribbean peoples). When we discuss populations who have borne the brunt of systemic oppression, racism, and injustice, we describe them as “historically marginalized.”

Specific issues pertaining to spirituality in palliative care are covered elsewhere, as are a detailed discussion of communication skills required for optimal care of patients and their families/friends and an overview of the key issues faced when clinicians are caring for patients from varied backgrounds. (See "Overview of spirituality in palliative care" and "The patient’s culture and effective communication".)

DEFINITIONS AND BACKGROUND

Culture — Culture is typically defined as a body of values, perspectives, beliefs, behaviors, and traditions that are salient within a specific group or for some at the individual level. Race, ethnicity, gender identity, sexual orientation, social class, immigrant status, experiential racism and systemic oppression, religion, and family constellation can all intersect to create an individual person’s culture [1]. At its most basic, culture is the world any person inhabits, and it informs how they understand themselves and impacts their actions. Notably, people can inhabit multiple cultures simultaneously in both their personal and professional lives. (See "The patient’s culture and effective communication", section on 'Culture'.)

Cultural humility — Culturally appropriate care enables clinicians to deliver services that are respectful of and responsive to the health beliefs, practices, and linguistic needs of all patients. Such care ideally demonstrates “cultural humility” [2], which is not dependent on the discrete mastery of a fixed and finite body of knowledge [3]. Cultural humility is defined as a process of openness and self-awareness in which one incorporates self-reflection and critique while interacting with all individuals [4]. Cultural humility recognizes that culture is mutable over time and uniquely defined in the context of a patient’s life experiences and beliefs. It requires the clinician’s active engagement with and curiosity about each patient as a person, including how the patient fits into their larger cultural community. It also requires that clinicians reflect on how their own culture and the culture of contemporary biomedicine [5] may be interacting with the patient’s culture to influence patient care and the patient-clinician relationship [2,6,7]. As an example, medical values about the importance of clinician detachment and objectivity may represent barriers to culturally appropriate care, particularly among historically marginalized groups [5].

Cultural issues and health care disparities — Multiple barriers to high-quality end-of-life care for patients have been identified, especially for patients from historically marginalized groups. One example is a failure on the part of clinicians to provide culturally appropriate care that considers differences in cultural attitudes toward suffering, death, decision-making styles, varying roles of family or friends, and patient and family preferences for information-sharing [1,8,9]. For patients living with serious illness, cultural disparities have been noted in the provision of adequate pain management [10,11], access to and use of hospice care [12-16], engagement with advance care planning (ACP) and completion of advance directives (ADs) [8,12,17-23], and more.

The importance of understanding the patient and family or other loved one’s cultural background and how it relates to their decision-making process and approach to illness, pain, grief, dying, and bereavement is underscored by the inclusion of cultural aspects of care as one of the domains in the Clinical Practice Guidelines for Quality Palliative Care.

IMPACT OF CULTURAL ISSUES ON PATIENTS AND THEIR FAMILIES/FRIENDS

Traditions, customs, and spirituality — Many of the myriad traditions and customs that help to shape a person’s cultural environment have a significant relation to health and illness, including issues related to dietary practices, folk remedies, and certain religious customs. While it is not possible to describe even a fraction of these medically relevant traditions and customs, it is important to have an awareness of their significance, as well as the openness and skills to explore them further with individual patients. Many of these health-based traditions and customs are directly related to the patient’s worldview, religion, or spiritual beliefs. (See "The patient’s culture and effective communication", section on 'Traditions, customs, and spirituality'.)

Illness and death are among the most powerful and mysterious phenomena in our existence, and people often seek meaning in these experiences through spirituality. Questions that can help clinicians learn more about patients’ customs, religion, and spirituality can be found in the table (table 1).

Issues of gender roles and sexual orientation — The needs of lesbian, gay, bisexual, transgender, queer, intersex, asexual, and questioning/nonconforming (LGBTQIA+) patients are important to understand and address. This topic and techniques for understanding sexual and gender issues, customs, and taboos are presented elsewhere. (See "The patient’s culture and effective communication", section on 'Sexual and gender issues'.)

Some important points that are relevant to palliative and end-of-life care are worth noting here. The inclusion of all care partners in medical decision-making is essential. While research on this topic is limited, inclusion of care partners has also been identified as a high priority for LGBTQIA+ patients [24]. For many LGBTQIA+ individuals, as well as many other patients, the concept of family may be broad and considered “family members by choice” rather than by birth. Nonetheless, the majority of LGBTQIA+ patients have not named a surrogate decision-maker or formalized this process through an advance directive (AD) [25-29]. The adoption of same-sex marriage laws across the United States as of 2015 has allowed for married LGBTQIA+ care partners to be considered default surrogate decision-makers in those states that have default surrogate laws. However, for unmarried partners, for “family members by choice,” or in states without the default surrogate legal provision, LGBTQIA+ partners remain at risk for exclusion and often continue to experience stigma. For example, partners facing the loss of same-sex loved ones may experience grief that is not recognized as legitimate by uninformed parties [25,30]. In such cases, these patients and families may need additional support [24,25].

In many parts of the world, binary gender roles are still strictly defined and enforced. For example, in some cultures, the male role is seen as that of protector and spokesperson for the family. Cultural differences in attitudes towards sexuality and gender roles should be addressed with tact and respect to maintain the therapeutic relationship. Health care providers must respect differing sexual and gender identities when working with patients of all cultures to promote a trusting relationship.

Issues related to pain, suffering, and distress — Pain and suffering are complex phenomena encompassing aspects of physical pain, psychosocial distress, and spiritual and existential suffering. (See "Overview of spirituality in palliative care", section on 'Spiritual distress and existential suffering'.)

An individual's experience of pain is subjective and personal, influenced by a complex interaction of multiple biological, psychological, and social factors, which, together, result in variability in the experience of and response to pain. Differences in self-reported pain are corroborated by scientific data demonstrating biological variations in mechanisms that contribute to one's pain response. For example, studies demonstrate interindividual differences in cerebral activation in response to identical pain stimuli. Additionally, genetic differences, such as different haplotypes of the gene that encodes catechol-O-methyltransferase and variations in the mu-opioid receptor gene, influence pain sensitivity, presentation, and impact [31].

Such biological and genetic differences interact with psychosocial and cultural variables to influence each individual’s pain experience. Although research may report differences in the pain experience between persons of different demographic groups, the demographic factors likely serve as proxies for underlying factors that modulate the experience of pain or its expression for each individual [31].

Patients can experience several types of pain simultaneously, and one type of pain (eg, physical) may contribute to another type of pain (eg, psychological). Further, experiences of physical and existential suffering may be given meaning through cultural understanding [32]. Differences in how people perceive, experience, and communicate pain have been documented, and culture may play an important role [33,34]. Individual patients will respond differently to pain and to strategies to manage pain. Sample questions for taking a culturally appropriate pain history following an “explanatory models approach” [35] can be found in the table (table 2).

Attitudes about discussing serious illness and death — Patients express a variety of attitudes toward discussing life-threatening illness and death, both within and across cultural boundaries [36]. It is important to consider these attitudinal variations because a patient’s attitude toward death may influence clinical decision-making practices (eg, patient-centered versus family-centered decision-making) as well as end-of-life treatment preferences (eg, using ADs, electing hospice care, etc). (See 'Hospice referral and use' below.)

There are broad geographical and cultural underpinnings in these attitudes. For example, clinical settings that are schooled in Western bioethics tend to value autonomy, agency, and transparency, entailing full disclosure between the doctor and the patient, even for life-threatening diagnoses and terminal prognoses. By contrast, many patients from other cultures might prefer not knowing when they have a terminal illness [37,38], and some patients believe that discussing death might in fact hasten its occurrence [38-42].

However, cultural norms are fluid, and one cannot make assumptions about how any given individual might wish to approach discussing serious illness or the possibility of death. Clinicians should ascertain each patient’s unique needs and refrain from making assumptions based on patients’ culture [37]. Because it is impossible to predict individual preferences, clinicians should ask all patients how much and what type of information they wish to receive in order to tailor the approach to information disclosure to the patient’s preferences. Clinicians should also explore the patient’s preferences for how much information is to be shared with individual family members. (See 'Tools and strategies for providing culturally appropriate care' below and 'Assessing communication, information-sharing, and decision-making preferences' below.)

Medical decision-making — There are variations in the ways that patients make health care decisions, which may reflect cultural values. As an example, the primacy and autonomy of the individual is often valued in Western cultures [8,12,37,43,44], although some patients and their families/friends may prefer a family-centered decision-making model [37,43,45] or even to have doctors aid in decision-making [46]. For example, in one study of English- and Spanish-speaking older adults receiving care in a public safety net hospital in the United States, close to 20 percent reported they did not want to make their own medical decisions and preferred family, friends, or clinicians make decisions for them [46].

While Western biomedicine has made great efforts to instill individuals with decision-making power, some patients prefer to take a more passive stance in medical decisions, relying to a greater degree on clinicians’ medical expertise to guide treatment decisions [46]. The processes and ideals of the shared decision-making model of Western biomedical practice may confuse individuals from cultures in which healers receive deferential treatment; indeed, they may lose confidence in clinicians who ask for patients’ views [47]. Clinicians must carefully balance patients’ individual communication and decision-making preferences when seeking to provide medical care that is consistent with patients’ goals and values. (See 'Assessing communication, information-sharing, and decision-making preferences' below.)

Advance care planning and advance directives — The goal of advance care planning (ACP) is to help ensure people receive medical care that is consistent with their values, goals, and preferences during serious and chronic illness. The definition of ACP continues to evolve over time. In response to high-profile court cases in the 1970s, ACP was initially defined as legal documents about end-of-life procedures. The definition was subsequently updated in 2017 as “a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care” [48]. The definition has evolved still further to focus on preparation of patients and surrogates for communication and medical decision-making for both current and future medical care [49,50]. Many ACP activities may occur in health care settings, but many may also occur in patients’ homes and communities. In the health care setting, ACP documentation includes clinical notes reflecting discussions between patients and clinicians about patient preferences for care; patient-provided documents and legal forms, such as ADs, living wills, documentation of proxy decision-makers for health care; and clinician-completed documents such as Physician/Medical Orders for Life-Sustaining Treatment forms. (See "Advance care planning and advance directives".)

ACP is a form of decision-making based on underlying values, and a patient’s cultural norms likely influence their personal preferences surrounding ACP discussion and documentation. While there are differences in rates of ACP and completion of ADs based on race and ethnicity, the cause of these differences is likely complex [51]. In general, White patients tend to have higher rates of completion than persons from underrepresented and historically marginalized groups [8,12,17-23,52-55].

Research points to several mechanisms that intersect to explain disparities in engagement with ACP. Some factors may stem from patients, including knowledge about ACP [17], health literacy, degree of comfort discussing death, preferences for or against aggressive care near the end of life, spiritual beliefs, and attitudes and/or distrust toward modern health care institutions [12,56]. Historical acts of injustice committed within the health care system, such as the infamous Tuskegee Syphilis Study, have also contributed to a milieu of distrust that likely impacts some patient populations and may contribute to disparities in ACP [8,12,44,56,57]. Clinicians also play an important role in their patients’ engagement with ACP. For example, unconscious biases and assumptions about a patient’s preferences (based on cultural stereotypes or other factors) may influence a clinician’s decision to engage in ACP with their patients.

It is important for clinicians to clarify that the process of ACP is meant to empower patients to discuss their treatment preferences with trusted friends, family, and/or health care providers to ensure that their voices can be heard and their wishes known if their decisional capacity or ability to communicate a preference is ever compromised.

Practical advice for the clinician on approaching ACP with patients and their families/friends in a culturally appropriate manner is discussed below. (See 'Advance care planning' below.)

Hospice referral and use — There are many studies documenting race- and ethnicity-based disparities in hospice use. The broad trends are consistent, showing that White patients enroll in hospice far more than any other group [58]. The National Hospice and Palliative Care Organization report from 2020 showed that 82 percent of hospice patients were White, 8.2 percent were Black, 6.7 percent were Hispanic, 1.8 percent were Asian/Pacific Islander, and 0.4 percent were Native American [58]. The Western hospice philosophy defines a “good death” as being at home, surrounded by friends and family [47], but this cultural ideal may not resonate with all family cultures.

In addition to cultural and spiritual considerations that contribute to lower utilization of hospice among underrepresented and historically marginalized populations, there are also health care access issues. Isolated rural areas have less reliable access to Centers for Medicare and Medicaid Services-accredited hospices [59], a situation that Congress worked to remedy by passing the “Rural Access to Hospice Act” in 2021 [60]. Reservations are often located in remote rural areas, so collaborative efforts between the Native American community and hospices serving rural communities have the most success in reaching these communities and providing culturally sensitive care [15,61].

Likewise, general attitudes toward the modern health care system, which are largely shaped by a community’s social history, relationship with the health care system, and health care access, may impact the decision to use or forego hospice services. As an example, distrust of the health care system [62], discomfort discussing death, desire to pursue aggressive care at the end of life, and spiritual beliefs together interact to explain why some people may have less favorable beliefs about hospice care and decreased hospice utilization [8,12,20]. However, what appear to be cultural differences in hospice utilization may actually be driven by provider and system level issues such as hospice being framed around Western ideals of death [47,61] and providers spending less time at the bedside with underrepresented and historically marginalized patients [63]. For example, a study that examined audiotaped hospital consultations between palliative care clinicians and patients with advanced cancer found that clinicians discussed prognosis less frequently with patients who identified as being Black or Hispanic, even when those patients expressed values that were geared more towards comfort near the end of life [64]. Additionally, when prognostic communication did occur, it was framed differently in conversations with Black and Hispanic patients as compared with others. Such disparate prognostic communication likely influences patient and family prognostic understanding, and therefore decision-making, at the end of life.

Practical advice for the clinician on providing hospice education in a culturally appropriate manner is discussed below. (See 'Hospice education and referral' below.)

Behavior around the time of death and in acute bereavement — Upon a patient’s death, clinicians’ responsibilities may shift from the patient to the bereaved family or friends. To attend to the family or other loved one’s grief in a therapeutic manner, clinicians should be familiar with some cultural variations that influence grief and bereavement [43]:

Expressions of emotion – Patients from different cultures may have different ways of expressing grief or other emotions.

Religious traditions – Some religions, such as the Catholic Church, have a sacrament (“Anointing of the Sick”) that may be administered to a patient who is seriously ill or at risk of death due to sickness or infirmity.

Function of the funerary ritual – Some cultures use funerals to celebrate the deceased person’s life or to provide the opportunity to express individual and collective grief and comfort. Other communities might view funerals as a ritual “to help the spirit progress through the spirit world.”

Length of bereavement – Grief is culturally shaped. Some cultures may grieve the death of loved ones for an entire lifetime, while other cultures may limit the grieving period to a few days.

Postmortem treatment of the body — Asking about important rituals, beliefs, and logistical or timing issues when caring for someone’s deceased loved one offers clinicians a straightforward opportunity to provide culturally appropriate care and comfort to the family/friends. The following may be influenced by cultural and religious differences [43,65,66]:

Body disposal (eg, cremation versus burial)

Orientation of the body

Handling the body after death

Timing of burial or cremation

Color of clothing on the corpse

Use of makeup to enliven the corpse

Organ donation and autopsy — Discussion of organ donation and autopsy requires particular attention for many reasons, not least of which is distress immediately following a loved one’s death. Patient and family/loved one’s values pertaining to organ donation and autopsy are influenced by cultural beliefs, religious traditions, and community norms. Importantly, there are times when examining the body through autopsy is a legal necessity, such as in the case of an unexplained death. In those circumstances, it is essential to be clear with the deceased’s family or friends that the medical examiner has determined that the autopsy is required for legal reasons.

In other circumstances, some examples of cultural variations that may impact willingness to serve as an organ donor or pursue autopsy include the following:

Cultural beliefs may conflict with the practice of organ donation and autopsy in communities that value wholeness or leaving the body intact during burial, as seen in cultures influenced by Islam [43]. In most Islamic societies, autopsy is allowable when required (such as in the case of a suspicious death), although all efforts are made to proceed quickly and in the most respectful and minimally invasive way possible. In general, the family proceeds with ritual washing and shrouding of the body for burial after the autopsy is complete and the body is returned to the family [67].

For some persons, barriers to organ donation include decreased awareness of transplantation as a treatment option, distrust of the medical community, fear of racism [68], medical comorbidities, concerns about surgery, financial concerns, and fear that death will be declared prematurely if one agrees to be a donor.

IMPACT OF CULTURAL ISSUES ON CLINICIANS — Meeting the needs of culturally and linguistically varied populations requires effective clinician-patient communication and sensitivity to cultural and linguistic specificities [69]. The point of cultural humility is not for clinicians to memorize and rely on cultural stereotypes; rather, it is to be more active in exploring opportunities to provide care that is tailored to each unique patient and their family or friends.

Unconscious bias — Clinicians’ attitudes (no less than those of their patients) are informed by their past life experiences and the culture of biomedicine in which they practice. As such, all clinicians run the risk of employing unconscious bias when interacting with their patients, which can lead to unintended acts of discrimination. Because one is unable to correct for biases of which one is unaware, active curiosity and self-reflection are essential to providing culturally appropriate care. Absent time for reflection and thought, clinicians may rely more heavily on habitual, “rule of thumb” decision-making patterns, which can inadvertently result in perpetuating disparities [70,71]. This effect is amplified in situations where the clinician’s escalating cognitive load (more patients, less time, more paperwork) thwarts a thoughtful engagement with each patient [72]. (See 'Tools and strategies for providing culturally appropriate care' below.)

Impact of clinician beliefs — Cultural humility requires a respectful curiosity about the patients in one’s care as well as the ability to recognize one’s own beliefs and values and how they may be interfering with the optimal care of patients. For example, Western biomedicine has been characterized as having a “culture of no culture,” in which medical professionals are presumed to possess knowledge of “real” things, such as disease pathophysiology, whereas a patient’s understanding of disease is considered “cultural” and thus less real, often at the expense of patient experience [5].

Clinicians can experience value conflicts (or moral distress) when the wishes of a patient directly counter those of the health professional [73]. Consider the clinician who feels it is important to tell the patient that they have terminal cancer despite the patient and family’s preference that the patient not be told the specifics of the diagnosis. Or consider a patient who deliberately forgoes life-sustaining therapy that the medical providers consider to be minimally burdensome: for example, a diabetic man in his 60s who has a life-threatening limb infection. His life could be saved with amputation, and his functional impairment could be limited to those things associated with the loss of his leg. However, for reasons involving his family, his beliefs, and how he wants to live, he prefers death to amputation, leading to tremendous upset among the medical teams caring for him, who struggle to understand his choice and require multiple reassurances that he understands his decision and has the capacity to make it.

TOOLS AND STRATEGIES FOR PROVIDING CULTURALLY APPROPRIATE CARE — There are limited data about what strategies may improve the provision of culturally appropriate care for patients with serious illness. All the interventions demonstrated to provide benefit rely heavily on improving clinician training in cross-cultural issues and clinician-patient communication. Practices that have shown promise in reducing disparities in the health care setting include tailoring interventions around patients’ cultural needs, providing health education in an easy-to-read format in the patient’s native language, having patient navigators, engaging multidisciplinary care teams in delivering culturally relevant care and education, and initiating patient health education programs that are interactive and skills based rather than only didactic [74]. Some strategies that may help in serious illness specifically include consultation with subspecialty palliative care [75,76], providing spiritual support [77], enhanced communication with the patient and family or other decision-makers regarding goals and values [78-80], and providing patients with education about available services (eg, home care, hospice, etc). (See "Benefits, services, and models of subspecialty palliative care" and "Discussing goals of care" and "Overview of spirituality in palliative care" and "Hospice: Philosophy of care and appropriate utilization in the United States" and "Palliative care and hospice outside of the United States".)

Caring for patients in a culturally appropriate manner: An individualized approach — Cultures are heterogeneous, and dynamic, and individuals within these cultures vary in their expression and embrace of cultural beliefs and practices. In our multicultural society, patients can have vastly different attitudes and approaches toward discussing illness and death, making medical decisions, fulfilling spiritual and familial needs, and understanding the meaning of suffering. In addition, due to experiential racism in health care, they may also have grave mistrust of the health care system. Clinicians must therefore connect with each individual patient on a human-to-human level [81], working to identify the narratives each person uses to make sense of their life [82] and to clarify wishes and priorities.

Importance of trust — The need to foster clinician-patient trust is a common theme in studies about providing palliative and end-of-life care, particularly to historically marginalized racial and ethnic groups. Crawley et al advocate reframing discussions about patient “distrust” into discussions about how clinicians and health care providers can establish “trustworthiness” [83-85], including by asking patients about past experiences with discrimination in the health care system [86]. As a clinician, one cannot undo past injustices and episodes of discrimination, nor can one erase the impact of centuries of structural and systemic racism in society or health care. However, one can foster interpersonal trust by making an effort to learn about the unique customs, practices, and experiences of patients and their families/friends and by demonstrating compassion, credibility, and reliability [83] through clear communication, learning about and respecting interpersonal differences, and building shared understanding (table 3). (See "The patient’s culture and effective communication", section on 'Trust'.)

Culturally appropriate communication — All those suffering from ill health desire communication, information, respect, and a trusting healer-patient relationship [87]. General strategies that can empower clinicians to communicate in a culturally appropriate manner and help foster a trusting clinician-patient relationship are outlined below and in the table (table 3). (See "The patient’s culture and effective communication", section on 'Styles of communication'.)

Minimizing linguistic and cultural misunderstanding — Clinicians can ensure that patients receive medical information in easy-to-read formats and in the language with which they are most familiar [88,89]. If English is not the patient’s first language, we recommend utilizing a professional interpreter (table 3). This is particularly vital for sensitive conversations, such as those pertaining to serious illness and advance care planning (ACP) [45]. Using professionals is important for several reasons:

Communication errors and misunderstandings are common when clinicians attempt to speak in English to patients with limited English proficiency [90].

Using ad hoc interpreters in the form of bilingual staff or other family members can be potentially problematic. Ad hoc interpreters make significantly more errors than do professional interpreters, including omission and editorializing, many of which have clinical consequences [91]. Additionally, patients may worry about privacy and confidentiality, and clinicians may have concerns that family members will alter content in translation either to suit their own preferences or to “protect” the patient [38,91].

Health literacy — Clinicians must ensure that patients receive medical information in a way they can understand. Health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” [45,92]. Nearly one-half of the United States population has limited health literacy [92]. In addition, physiologic stress and high emotional burden can hinder an individual’s ability to obtain and process health information. (See "The patient’s culture and effective communication", section on 'Language and literacy'.)

Limited health literacy affects many patients and caregivers and can compromise the ability to understand even simple medical information, especially during times of stress [93-96].

Clinicians should create a shame-free environment, speak slowly, use visual aids (if available), and offer frequent opportunities for the patient/family/other friends to ask questions (ask “What questions do you have?”). Clinicians should summarize key points and use the “teach back” method to ensure that the patient understands what was said, asking the patient or family/friends to repeat the information you shared with them in their own words [97]. An educational video is available from the American Medical Association Foundation on health literacy and patient safety, which provides tools to improve clinician-patient communication, patient understanding, and patient self-care. Suggested phrases to use during the conversation are available in the table (table 3).

Given the above, clinicians should take a universal approach to clear health communication for all patients, demonstrating respect through deliberate verbal and nonverbal communication:

First, ensure all medical personnel introduce themselves and their roles.

Initially, address patients using their last name (and title if relevant) to communicate respect. Subsequently, ask their preference as to how they wish to be addressed. This allows patients to indicate preferences not only regarding title and first name/last name but also pertaining to gender-specific pronouns.

Speak slowly and with a measured tone. Sit down, face the patient (not the computer screen), and speak with the patient at eye level. This is particularly important for patients who speak a language other than English or for those who may be hard of hearing. Use straightforward sentences and words, avoiding medical jargon (eg, “prognosis” and “benign”) and idioms (eg, “We’ll cross that bridge when we come to it” or “Let’s make sure we’re all on the same page”).

Assure the patient that all information discussed is confidential and will only be shared with other health professionals who require the information to provide care, unless the patient explicitly gives permission for it to be shared with friends or family members.

Avoid questions or phrasing that can be interpreted as leading to an “us or them” dynamic [98]. For example, asking about the patient’s community, family, and decision-making style (eg, “How do you and your family make medical decisions?”) may be preferable to asking about their “culture,” which can imply that the patient is different from the clinician and may even convey unintended insult. (See 'Learning about the patient as a person and respecting interpersonal and cultural differences' below.)

To better meet the needs of all patients, patient education materials should be uniformly targeted at a fifth-grade reading level, the mean reading level of older adults in the United States [97]. Even people with high levels of education and health literacy prefer health information in an easy-to-understand format. As an example, in one study, advance directive (AD) forms written at a fifth-grade reading level were universally preferred by patients of both high and low literacy levels over a standard legal form [88].

Learning about the patient as a person and respecting interpersonal and cultural differences — Regardless of backgrounds and belief systems, it is always possible to talk sensitively with patients and their families/friends about the management of symptoms and alleviation of suffering, their preferences regarding how serious illness is discussed and managed in their family and community, and their hopes and concerns about the future [1,39]. Directed, open-ended questions that help the clinician better understand the patient as a unique individual are useful as a starting point, including asking about important aspects of the patient’s life, family, and spirituality. Such exploratory questions help clinicians learn more about the patient as a person while identifying issues and stressors important for the patient’s care and treatment (table 1).

By asking straightforward questions about a patient’s symptoms, clinicians are engaging in “low-context” communication to elicit factual information about their illness experience [99]. Direct or “low-context” communication relies less heavily on shared cultural context than “high-context” communication (eg, relying on nonverbal cues; making specific cultural references or metaphors; using slang). It is important for clinicians to recognize that some individuals value high-context communication over low-context communication. Clinicians are encouraged to seek clarification if they sense that they are missing context, nuance, or shared reference points in a conversation [99].

Assessing communication, information-sharing, and decision-making preferences — Given the tremendous individual variations in patient and family preferences for information-sharing and medical decision-making, clinicians must be open to patients’ communication and medical decision-making preferences. To achieve this, it can be helpful to use open-ended questions that respect values and beliefs across cultures [87,100].

One can start by assessing the patient’s desire for medical information, as well as how they like to receive it (table 4). As part of that process, assess which family or community members the patient may want present for information-sharing and decision-making. With the patient’s consent, clinicians can involve family members or others in these discussions.

When the family requests that clinicians communicate with the family instead of the patient — Sometimes, families or other friends express a preference for all information to go through them instead of the patient. Indeed, in some cultures, this is the normal and preferred means of medical decision-making. However, whether it is normal within the context of that patient’s culture of origin is less important than the patient’s wishes on the matter. Such an arrangement is entirely acceptable if it is consistent with the patient’s wishes. Therefore, determining the patient’s preferences for information-sharing and medical decision-making is essential. (See "The patient’s culture and effective communication", section on 'Family dynamics'.)

When a family requests that the patient not receive medical information or be involved in decisions, clinicians can assess the patient’s preferences directly in a manner that avoids sharing information that the patient may not want to hear; a suggested approach is included in the table (table 4). When taking this step, it is critical that the health care provider includes key family members or other decision-makers in the discussion and prepares them in advance that the health care team will honor the patient’s wishes, whichever way they are expressed. Not including the family or other decision-makers may lead to distrust of the clinician. Strategies to manage requests from family members to withhold information from patients are discussed in detail elsewhere. (See "Ethical issues in palliative care", section on 'Requests from the family to withhold information'.)

Importantly, patients sometimes change their minds and later wish to be included in discussions that they initially chose to avoid. It can therefore be helpful to check in with patients intermittently regarding their desired level of involvement and certainly before major conversations or decision-making discussions; a suggested approach is included in the table (table 4). If the patient confirms a preference not to be involved in the meeting and/or decision-making, the clinician can proceed, reminding the patient that they are welcome to ask questions at any time.

Eliciting illness understanding and assessing the patient’s priorities and values — Illness understanding encompasses not only the patient’s broader sense of the meaning of the illness and its symptoms but also their expectations of the illness and potential treatments [101]. Because one’s interpretation and experience of illness are culturally shaped, learning about how patients see and understand their illness is essential to designing an effective treatment plan that patients can embrace. See the table for questions that can aid clinicians in eliciting patients’ understanding, interpretation, and experience of their illness (table 5). (See "The patient’s culture and effective communication", section on 'Explore the meaning of illness'.)

For such inquiries to be effective, clinicians must show patients that their ideas are of genuine interest and importance to clinical management, and aim to incorporate the patient’s and family’s cultural and spiritual needs wherever possible [101].

Effective medical decision-making necessitates designing a medical plan of care that aligns with the patient’s values and wishes. Achieving this requires a shared understanding of both the medical realities and the patient’s hopes and priorities, which greatly influence the goals of care. (See "Discussing goals of care".)

If the medical realities are the landscape that the clinician and the patient approach together, the patient’s values and wishes are the flashlight that helps illuminate which path will most benefit that individual patient:

Asking about the patient’s understanding of the illness serves as a starting point for shared decision-making (table 5).

Asking about hopes and worries for the future using directed, open-ended questions can help the clinician discover the patient’s wishes for care and important values that will guide medical decision-making and map out goals for future care (table 5).

Practical advice for discussing advance care planning, palliative care, hospice, and miracles

Advance care planning — Clinicians should seek to understand patients’ personal and cultural beliefs when approaching ACP, recognizing that patients and families/friends differ in their knowledge and understanding of ACP. It may be helpful to start by explaining the purpose of ACP (see 'Advance care planning and advance directives' above) and by getting a sense of what the patient may have discussed previously with other clinicians and/or family and friends. One can use open-ended questions that respect the values and beliefs of a wide range of cultures [100] to elicit patients’ hopes, fears, and wishes about treatments and outcomes (table 6) [57]. (See 'Eliciting illness understanding and assessing the patient’s priorities and values' above.)

Ideally, and with a patient’s permission, surrogate decision-makers are included in these discussions so that they are better prepared to support the patient’s wishes going forward. (See "Advance care planning and advance directives", section on 'Surrogate decision-makers'.)

Additionally, some data support the view that educational barriers to ACP may be overcome with video decision aids [102], easy-to-read ADs [88,89,103], and interactive, patient-facing ACP websites that provide universal access to health information in multiple languages, including PREPAREforYourCare.org (table 6) [89,103]. Practical tips and phrases for engaging in ACP discussions with patients can also be found in the table (table 6). (See 'Eliciting illness understanding and assessing the patient’s priorities and values' above.)

Importantly, clinicians must recognize that the point of ACP is not to get the patient to sign a form or to accept a particular “code status.” It is instead to help patients define and clarify their wishes and priorities for medical care to prepare them for the future and to aid in future decision-making. Some patients may be willing to discuss wishes for care with family or friends but not with a health care provider [57]. Others may not be comfortable with discussing hypothetical situations. If that is the case, the clinician can encourage the patient to name and document a surrogate decision-maker and to talk with the surrogate about their wishes, leaving the rest of the form blank. Then, with the patient’s permission, the clinician, patient, and surrogate can meet together to discuss the patient’s wishes for care (table 6).

Discussing palliative care with patients — It is important to distinguish palliative care from hospice and end-of-life care, using language that is clear and acceptable to patients. A review of the literature examining public perceptions of ACP, palliative care, and hospice found that 66 to 71 percent of participants reported no awareness of palliative care and often conflated it with end-of-life care, while a majority of participants (80 to 90 percent) reported awareness of ACP and hospice and most of those had favorable impressions of both [104]. This is aligned with public opinion polls of conducted by the Center to Advance Palliative Care in 2011 and 2019, both of which demonstrated a limited understanding of palliative care amongst the general public. In both surveys, providing participants with a straightforward definition of palliative care improved their perception of palliative care and whether or not they would be willing to consider it for a loved one [104-107]. When speaking about palliative care, using patient-centered language and preferred terms, such as “person with a serious illness” and “living with serious illness,” is recommended [106]. Clinicians are also encouraged to use the patient-friendly definition of palliative care, published in the Clinical Practice Guidelines for Quality Palliative Care (table 7), when speaking with patients and families/friends about palliative care. Notably, while this definition has been “consumer tested,” it has not yet been widely or specifically tested in historically marginalized populations or in patients with low health literacy.

Hospice education and referral — There are many barriers to hospice referral and enrollment, some of which transcend culture, including poverty, housing challenges, and family structures that cannot support home caregiving for a seriously ill loved one. For some families/friends, providing intimate physical care is inconsistent with their relationships or cultural values, making home hospice with primary family caregivers inappropriate. In addition, health care professionals often lack crucial knowledge about insurance eligibility related to hospice, making it harder for patients to consider hospice as a viable health care option [108]. (See 'Hospice referral and use' above.)

Strategies for improving knowledge of hospice care include increasing outreach in historically marginalized communities, enhancing understanding of cultural issues in death and dying within the medical community, and improving communication with community members who do not speak the dominant local language [109].

Patients may not understand what services are available to them through hospice, the payment structure, or how various services may help them. Clinicians should work with patients to determine what services would best meet their needs. If that is hospice, it can be helpful to describe the services and why they might help before labeling them or introducing the word “hospice” (table 8). Recognize, however, that there are disparities in what hospice and palliative care resources are available in different communities. Certain communities and rural areas may have limited access to hospice and other services; this may require troubleshooting on the clinician’s part to devise a plan that is both effective and realistic. See the table for tips on how to discuss hospice with patients and families/friends (table 8).

Approaching patients and families who desire life-sustaining care in the face of a dire prognosis — Sometimes, patients or their families/friends desire life-sustaining care even when the prognosis is dismal and, from the clinician’s viewpoint, care is futile and death is a certainty. Belief in miracles and divine intervention is common [110], and family members may express hope for a miracle, even when facing a loved one’s imminent death. The concept of a “miracle” can express a multitude of hopes, fears, and religious beliefs [111]. Such hopes can drive wishes for ongoing aggressive care, even when such care seems to add to patient discomfort without the potential for therapeutic benefit. This dynamic may be most pronounced if the patient is young or a child.

Clinicians can find goals of care discussions in these circumstances extremely challenging. Approaching the patient and their family or other friends with respect and curiosity about their decisions and beliefs can open the lines of communication so that the medical team can explore with them the full range of options available, including those that can ensure comfort while maintaining hope [110], such as aggressively maintaining comfort even while continuing life support or negotiating a time-limited trial of continued support [112]. (See "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit", section on 'Time-limited trials' and "The patient’s culture and effective communication", section on 'Engage in negotiation'.)

In order to respectfully negotiate a care plan with the patient and their family or other friends that addresses medical realities, family beliefs, and the patient’s comfort and dignity, the clinician must understand the family’s desires for life-sustaining care as well as the beliefs and values driving them (table 9). A suggested framework for discussing treatment preferences with patients who want life-sustaining treatment in the face of a dire prognosis is provided in the algorithm (algorithm 1). Additionally, engaging support from spiritual counselors and community members who share the patient’s values and cultural beliefs can provide comfort to the patient while also aiding in cultural translation between the patient and the health care team. This subject is discussed in detail elsewhere. (See "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit", section on 'Approach to patients who “want everything done”'.)

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)

SUMMARY

What is culture? – Culture is typically defined as a body of values, perspectives, beliefs, behaviors, and traditions that are salient within a specific group or for some at the individual level. Race, ethnicity, gender identity, sexual orientation, social class, immigrant status, experiential racism and systemic oppression, religion, and family constellation can all intersect to create an individual person’s culture. Optimal care for seriously ill patients should reflect each patient’s preferences, hopes, and values, considering their unique physical, emotional, social, and spiritual needs, all of which are heavily influenced by cultural factors. (See 'Definitions and background' above.)

Impact of cultural issues – One of the barriers to high-quality palliative and end-of-life care for patients from historically marginalized groups is a failure on the part of clinicians to provide culturally appropriate care that considers cultural and individual differences in attitudes toward suffering and death; preferences for how and what kinds of information are delivered to patients and families/friends; decision-making styles and the role of family or other decision-makers; and a lack of knowledge and/or wary attitudes about advance care planning (ACP) and hospice. (See 'Impact of cultural issues on patients and their families/friends' above.)

Importance of communication – Meeting the needs of culturally and linguistically varied populations requires effective clinician-patient communication and sensitivity to patients’ cultural understanding, preferences, and needs (table 1 and table 2). Approaching patients with cultural humility encourages clinicians to actively explore opportunities to provide care that is tailored to each unique patient and family. (See 'Impact of cultural issues on clinicians' above.)

To optimize cultural understanding and communication, clinicians must ensure that patients receive information in a manner they can understand by providing easy-to-read health education materials and utilizing a professional interpreter if English is not the patient’s first language (table 3). (See 'Culturally appropriate communication' above.)

Clinicians must be open to each patient’s communication and decision-making preferences. Clinicians must assess the patient’s desire for medical information and preferences as to how they wish to receive information, as well as what family or community members the patient may want present for information-sharing and decision-making (table 4). (See 'Assessing communication, information-sharing, and decision-making preferences' above.)

Eliciting illness understanding – To build shared understanding, clinicians must first elicit patients’, families’, and other friends’ understanding and interpretation of their illness, care plan, and therapeutic options before sharing new information with them (table 5). (See 'Eliciting illness understanding and assessing the patient’s priorities and values' above.)

Advance care planning – Clinicians must be open to patients’ ethnic, cultural, and personal beliefs regarding how ACP is approached and must take the initiative in these discussions. Learning what patients have discussed previously with family, friends, and other clinicians is an important first step, and surrogate decision-makers should be included in discussions whenever possible (table 6). Several patient-centered ACP resources can also be provided (table 6). (See 'Advance care planning' above.)

Practical advice for clinicians

Clinicians should assess the patient’s priorities and values using directed, open-ended questions (table 5). Such information is essential to aiding patients in medical decision-making and to providing goal-concordant care. (See 'Practical advice for discussing advance care planning, palliative care, hospice, and miracles' above.)

Patients may differ in their knowledge and understanding of specific resources, including ACP (table 6), palliative care (table 7), and hospice (table 8), and the information provided must be adjusted accordingly. (See 'Practical advice for discussing advance care planning, palliative care, hospice, and miracles' above.)

Sometimes, patients or their families/friends desire life-sustaining care even when the prognosis is dismal and, from the clinician’s viewpoint, care is futile and death is a certainty. Discussing goals of care with such patients and their surrogates can be very challenging. In order to respectfully negotiate a care plan with the patient and their family or friends, the clinician must understand their desire for life-sustaining care, as well as the beliefs and values driving them (table 9). A suggested framework for discussing treatment preferences with patients who want life-sustaining treatment in the face of a dire prognosis is provided in the algorithm (algorithm 1). (See 'Approaching patients and families who desire life-sustaining care in the face of a dire prognosis' above.)

ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges Barbara Koenig, PhD, who contributed to earlier versions of this topic review.

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References