Cultural Meanings of Death and Dying

Course #97364 - $30-


Self-Assessment Questions

    1 . According to the U.S. Census Bureau, which of the following is the largest racial/ethnic minority group in the United States?
    A) Blacks
    B) Hispanics
    C) Asian Americans
    D) Native Americans

    THE UNITED STATES: A MULTICULTURAL LANDSCAPE

    In 2020, the Hispanic population in the United States numbered 62.1 million [191]. The majority of the Hispanic population in the United States (35.9 million) identify themselves as being of Mexican descent [192]. Approximately 27% of the U.S. Hispanic population identify as Puerto Rican, Cuban, Salvadoran, Dominican, Guatemalan, Colombian, Honduran, Ecuadorian, or Peruvian [16].

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    2 . Which of the following states is among those with the greatest number of residents identifying as Native American?
    A) Kansas
    B) New York
    C) California
    D) South Dakota

    THE UNITED STATES: A MULTICULTURAL LANDSCAPE

    In general, this group is young, with a median age of 31 years, compared with the general median age of 37.9 years [112]. In 2018, the states with the greatest number of residents identifying as Native American are Alaska, Oklahoma, New Mexico, South Dakota, and Montana [113]. In 2016, this group had the highest poverty rate (26.2%) of any racial/ethnic group [112].

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    3 . What three main themes are generally included in any discussion of cultural competency?
    A) Cultural sensitivity, cultural knowledge, and cultural skills
    B) Encapsulation, acculturation, and lack of Western-ways of knowing
    C) Reduction of disparities, cultural sensitivity, and cultural orientations
    D) Understanding institutional norms, cultural knowledge, and self-awareness

    CULTURAL COMPETENCE AT THE END OF LIFE

    Although there is no universally agreed upon definition of cultural competency, three main themes are generally included in any discussion of the topic: cultural sensitivity, cultural knowledge, and cultural skills [2]. The goal of cultural competency is to reduce the differences between the institutional cultural norms of service delivery agents and the belief systems of patients from diverse cultural groups. Ultimately, this will help to minimize the disparities that exist in the current mental health and healthcare systems [22].

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    4 . Cultural sensitivity is defined as
    A) integration of cultural knowledge into daily practice.
    B) adherence to concepts of truth telling and autonomy.
    C) promotion of trust and mutual respect for cultural differences.
    D) a foundational understanding of different cultural worldviews, belief systems, and practices.

    CULTURAL COMPETENCE AT THE END OF LIFE

    Cultural sensitivity consists of promoting trust and mutual respect for cultural differences between providers and patients [2]. In end-of-life care, an understanding of cultural differences in beliefs about grieving is necessary. In Western culture, grieving is expected to be time-limited, and extended grieving can be considered pathologic [23]. However, in other cultures, extended periods of grieving are socially sanctioned. For example, Egyptian parents who have lost a child are allowed a grieving period that lasts up to seven years [24]. Some cultural and religious groups avoid talking about death and are therefore reluctant to discuss end-of-life planning, believing that to do so communicates defeat [194]. In terms of program planning, cultural sensitivity can be expressed in the design and implementation of physical layouts of space. For example, some cultures (e.g., Native American) revolve around extended family and the community. The physical environment in which a patient receives care should take into account this collectivistic orientation. Rooms large enough to accommodate the many extended family members who come to visit would be needed [25]. In Muslim culture, a patient and his/her family members might request that the patient's bed face Mecca [114]. Many Hmongs practice rituals, such as using charms to ward off evil spirits [161].

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    5 . Which of the following is NOT one of the domains of the Transcultural Assessment Model?
    A) Time
    B) Space
    C) Environmental control
    D) Help-seeking behaviors

    CULTURAL ORIENTATIONS AND HEALTH DECISION MAKING

    Giger and Davidhizar's Transcultural Assessment Model is often used to provide a framework to conceptualize the role of cultural orientations and belief systems in shaping health decision making. The Model identifies six cultural phenomena that practitioners must understand and incorporate into practice when working with culturally diverse patients and families. These six domains are [31]:

    • Communication

    • Space

    • Biologic variations

    • Time

    • Environmental control

    • Social organizations

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    6 . Which of the following is an example of behavior that characterizes a high-context culture?
    A) Focusing on what is being said
    B) Gaining information from verbal cues only
    C) Relying on shared experience and implicit messages
    D) Lack of awareness regarding the relationship between the two parties

    CULTURAL ORIENTATIONS AND HEALTH DECISION MAKING

    Styles of communication can be classified from high- to low-context [35]. High-context cultures rely on shared experience, implicit messages, nonverbal cues, the environment, and the relationship between the two parties to disseminate information [33,196]. Members of these cultural groups tend to listen with their eyes and focus on how something was said or conveyed [32,35]. On the other hand, low-context cultures rely on verbal communication, or what is explicitly stated in the conversation [33]. Consequently, low-context communicators listen with their ears and focus on what is being said [32,35,196]. Western culture, including the United States, can be classified as a low-context culture. On the other hand, groups from collectivistic cultures, such as Asian/Pacific Islanders, Hispanics, Native Americans, and African Americans, are considered high-context [35]. In one study, older immigrant Korean elders reported minimal communication with a healthcare provider about end-of-life issues [116]. This trend may be because practitioners assume that Korean and other Asian elders are not comfortable talking about death and dying, based on the cultural belief that discussing death openly invites bad events [166]. Asian elders tend not to explicitly raise the topic; practitioners should watch for nonverbal cues and resist ascribing this belief to all members of the Asian community. The Western biomedical culture emphasizes clear, concise, and precise communications, but this may appear to be brusque and insensitive to patients and families from high-context cultures [196]. Furthermore, there are some groups, like many Asian groups, who emphasize emotional restraint. Coupled with both a reliance on high-context communication styles and an avoidance in discussing end-of-life issues, it brings additional complexities to palliative care and discussion of end-of-life issues [197]. Clearly, adherence to cultural values influences communication styles. Cross-cultural communication is by no means simple, and there is no set of rules by which to abide. Instead, promoting culturally sensitive communication is an art that requires practitioners to self-reflect, be self-aware, and be willing to learn. Therefore, as practitioners become skilled in noticing nonverbal behaviors and how they relate to their own behaviors and emotions, they will be more able to understand their own level of discomfort and comprehend behavior from a cultural perspective [32].

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    7 . In order to determine the amount of physical space a patient requires to be comfortable, Chung recommends that practitioners
    A) maintain the 3-feet rule.
    B) arrange for an interpreter to assist.
    C) allow a family member to decide where everyone should sit.
    D) sit first then allow the patient to select where he/she would like to sit.

    CULTURAL ORIENTATIONS AND HEALTH DECISION MAKING

    The amount of social space or physical distance between two communicating parties is culturally charged as well. Depending upon the social context, Westerners tend to maintain a distance of about 3 feet, or an arm's length, in conversations [33]. In a public setting, where both parties are engaged in a neutral, nonpersonal topic, Westerners will feel encroached upon and uncomfortable if an individual maintains a closer conversational distance. However, in other cultures, such as Latino and Middle Eastern, a closer distance would be the norm [33]. Asians tend to prefer more space between the two conversational parties until they have developed a relationship. Chung recommends that in a clinical setting, the practitioner allow Asian patients to set the tone and social distance [36]. The practitioner can sit first and permit the patient to select where he/she would like to sit.

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    8 . In Hispanic families, what cultural value impacts family members' decisions regarding the use of nursing homes and hospice care?
    A) Respeto
    B) Dignidad
    C) Familismo
    D) All of the above

    CULTURAL ORIENTATIONS AND HEALTH DECISION MAKING

    The networks and groups (e.g., family, church, tribes, community, religion) with which individuals identify and derive their identity, social support, and frames of reference are considered a culture's social organization. These social organizations play an important role in individuals' decision making and health behaviors. For example, in Hispanic families, the cultural values of familismo (emphasizing the family over the individual), respeto (respect for older persons), and dignidad (maintaining dignity and not asking for help) impact family members' decisions regarding the use of nursing homes and hospice care [40]. Respect for the patient's religious and spiritual beliefs is also vital. For example, Muslim patients and their families may require prayer mats in the rooms. Care of female patients in certain racial/ethnic minority groups should take into consideration the gender of the practitioner and minimize unnecessary touching [167].

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    9 . In the United States and Northern Europe, what major event may have caused mourning practices to shift after the Victorian period?
    A) World War I
    B) The Civil War
    C) The Industrial Revolution
    D) The Civil Rights Movement

    DEATH AND DYING: WESTERN MEANINGS

    In the United States and Northern Europe, mourning practices may have shifted during World War I [45]. Prior to this, during the Victorian period, there were prolonged and complex mourning practices, some of which lasted for more than two years. However, because of the high death toll in the war, it has been posited that society psychologically distanced itself from the mourning and grieving process. Instead of expending time and effort with death and mourning rituals, energy was expended on working and patriotic efforts [44]. This may have formed the foundation of modern Western views of death and dying.

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    10 . Which of the following statements regarding cultural beliefs about death is FALSE?
    A) All Native Americans hold common beliefs regarding the afterlife.
    B) In Mexican culture, death is often portrayed in art, literature, and history.
    C) In Chinese culture, death is generally considered a taboo topic and is not discussed.
    D) In many Asian cultures, the ghosts of the dead are believed to be the cause of bad luck, ill health, or even death.

    ISSUES OF DEATH AND DYING: CULTURAL CONSIDERATIONS

    Many Hispanic cultures normalize death as part of the course of life and part of God's will (fatalism) [142]. In Mexican culture, death is often portrayed in art, literature, and history, leading some to claim that Mexicans have a "cultural familiarity with death" [51]. In Hispanic cultures, familismo plays a prominent role in the remaining life of the patient. All individuals who are considered family members, including children, have a place in the dying process [122]. Family members often come from afar and drop their day-to-day responsibilities to be with the patient [122].

    For African Americans, there is tremendous diversity in views about death depending upon individuals' religious affiliations. For example, African Americans with a Baptist tradition generally believe in heaven as an afterlife where the deceased will see God [51]. Some African Americans believe cremation inhibits entry into heaven [170]. A growing number of African Americans are Muslim, and Muslim tradition emphasizes spiritual progression in the afterlife.

    It is important to remember that there is no single monolithic culture among Native Americans, and they are very diverse in their beliefs regarding death. The concept of death for Native Americans is defined by beliefs regarding balance and harmony. In many Native American traditions, the worlds of the living and the dead are not separate but are believed to exist simultaneously. The bodies of the deceased help the earth to produce new life, thereby extending the cycle of life [52]. Some tribes in North America believe that the spirit and body are separate and when someone dies, the spirit leaves the body and travels in the land of the dead and can communicate with ancestors [201]. In a qualitative study with 27 participants from the Creek tribe, the individuals described transitions as being circular—not beginnings or finalities [52]. According to this belief system, death is an essential part of the cycle of life. However, not all Native American groups hold these same beliefs [53].

    Chinese views about death are influenced by Confucianism, Taoism, traditional Chinese medicine, and Buddhism [54]. Similarly, Japanese views of death are influenced by Shintoism, Confucianism, and Buddhism. In general, death is considered a taboo topic and to talk about death is to potentially bring about misfortune [27]. In a study in China, nurses discussed how they would incorporate traditional Chinese customs (e.g., placing a red apple at the nursing station to signify safety) [202]. Sometimes, they encouraged family members to pass out red envelops to ward off bad luck after certain medical procedures [202]. In Chinese and Japanese cultures, the soul is believed to remain in the body after death [123]. This belief informs various traditions surrounding death. For example, in Japan, after the physician officially declares the death, the nurses clean the body and apply makeup to the face of the deceased. A "seeing-off ceremony" involving the physicians, nurses, and family members is then done during the transfer of the body to the mortuary [123]. Similarly, Hmongs believe that the soul of the deceased individual requires help transitioning to the next life. Shamans, funeral singers, and soul guides may be invited to assist in this endeavor [163].

    The Chinese adhere to specific rules regarding treatment of the dead that reflect back to principles of propriety and filial piety. This includes ancestor worship, which consists of surviving family members honoring the dead by performing certain rituals (e.g., bringing and burning food and paper money at gravesites during an annual holiday to commemorate the dead) [27]. Ancestor worship rituals perpetuate the bond between the living and the dead [54]. Some Chinese individuals adhere to "memorial piety," or demonstration of remembrance through ancestor worship [171]. Not adhering to these traditions can cause displeasure among the ancestors and result in bad luck. This belief is partially an extension of the Chinese belief in evil spirits or qi (i.e., the flow of energy, in this case bad energy) [55]. In many Asian cultures, the ghosts of the dead can cause bad luck, ill health, or even death, as early deaths are considered the result of evil or angered spirits [55]. Widows are considered bad luck, and during the first year of mourning, they are expected not to join in weddings, birthdays, and other celebrations [124].

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    11 . In a study of older Korean individuals, all of the following were considered components of a "good death," EXCEPT:
    A) Dying without pain
    B) Dying unexpectedly
    C) Fulfilling parental duties in life
    D) Dying surrounded by one's children

    ISSUES OF DEATH AND DYING: CULTURAL CONSIDERATIONS

    Although many racial and ethnic minority groups share similar definitions to Western views of a good death, there are some cultural variations. For African Americans, the concept of a good death is dependent on the amount of control an individual has over his/her dying process and the amount of closure in his/her life [57]. Spirituality and religion are paramount in many African Americans' lives, and African American focus group participants stated that the deceased having a relationship with their Lord is a defining dimension of a good death [126]. In a systematic review, African Americans and Hispanics identified spiritual support as key to a good death [164]. Koreans have a specific term, ho sang, meaning good death or blessed death, used to describe death following a long and a prosperous life [58]. One study of older Korean individuals found that they defined a good death as having the following components [59,173]:

    • Having their children outlive them

    • Dying with their children around them

    • Having lived life without being a burden to their children

    • Fulfilling their parental duties

    • Dying without pain

    • Completing the natural order of life

    • Being prepared for death

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    12 . Which of the following factors is common to funerals or death rituals across all cultures?
    A) Connection to heritage
    B) Gathered community to offer support
    C) Symbols that convey culture and trigger emotions
    D) All of the above

    ISSUES OF DEATH AND DYING: CULTURAL CONSIDERATIONS

    To many people, death is considered a major life event, in some cases the last, and is marked as such by rites of passage. A rite of passage consists of a series of cultural practices that help transition a group or an individual from one phase of life to another [44,203]. Rituals are practiced as a group or as an individual, and they often have strong symbolic meaning [44]. Neimeyer, Prigerson, and Davies state that rituals "serve both integrative and regulatory goals by providing a structure for the emotional chaos of grief, conferring a symbolic order on events, and facilitating the construction of shared meanings among members of the family, community, or even nation" [64]. During a time of crisis and grief, rituals can be healing and provide structure to chaos [174,203]. Rituals help to acknowledge a change in status, serve as a mechanism to deal with feelings of powerlessness, and maintain a connection to the person who has passed [146,147,174,175]. These behaviors are not always rational, as they involve a high degree of emotion and sensory stimulation [175]. Rituals also bring people together to mourn and enhance relationships [148,203]. Five factors common to funerals or death rituals across all cultures are [127]:

    • Symbols that convey culture, trigger emotions, and help recognize the deceased

    • Gathered community to offer support to those left behind

    • Ritual action to bring everyone together but also help them to move on with their loss

    • Connection to heritage

    • Transition of the corpse

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    13 . Which of the following cultural practices is observed on the Día de los Muertos?
    A) Burning paper money at the gravesite
    B) Cooking favorite food items of the deceased
    C) Avoiding speaking the name of the deceased
    D) Burning incense near a picture of the deceased

    ISSUES OF DEATH AND DYING: CULTURAL CONSIDERATIONS

    Continuing the bonds with the deceased is also a part of Hispanic/Latino cultures. The underlying cultural norms include personalismo, which emphasizes close personal relationships, and familismo, which centers placing family over the individual, are inherent in many of the mourning rituals. Extended wakes are held for family and friends to convene, and during this time, there is food, games, and prayer [206]. Storytelling, keepsakes, religious rituals, and pictures may be used to remember lost loved ones [75]. Other practices include wearing mourning clothes (including dark colors), performing a novena with rosaries for nine days, and holding a mass on the first anniversary of the individual's death [206]. Cooking favorite food items of the deceased on the Día de los Muertos (the Day of the Dead) and using a certain flower to tempt the spirit of the deceased back home are cultural practices designed to stay connected with the deceased.

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    14 . Which color symbolizes death in Vietnamese culture?
    A) Red
    B) Black
    C) White
    D) Yellow

    ISSUES OF DEATH AND DYING: CULTURAL CONSIDERATIONS

    Expressions of grief and bereavement also vary from culture to culture. In Chinese tradition, wailing and weeping at a funeral are common. Family members and friends wear black or plain-colored clothing at the funeral and for a period of time after. During the grieving period, other happy celebrations, such as weddings and birthdays, are avoided [62]. In Vietnamese culture, the vocal expression of grief and the number of mourners is equated with the level of importance of the deceased [76]. Because of this, mourners may be hired to join in funeral processions. Instead of black, white is the color of death in the Vietnamese culture. Close family members wear simple white apparel, and guests may be given white headbands to wear [76]. In Chinese culture, the bereaved wear mourning apparel of different colors, signifying the relationship to the deceased [148]. However, public expression of emotion (including crying) is taboo in Chinese culture, especially among Taiwanese communities. In these groups, suppressing emotions is believed to facilitate the transition to the afterlife, as the deceased will not feel burdened to remain with the living [179].

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    15 . Which of the following is NOT a factor in the lower use of advance directives among black patients compared with white patients?
    A) The need to avoid speaking about death makes advance directive use impractical.
    B) A history of oppression may result in African Americans being fearful of giving up control.
    C) African Americans' experiences with institutional racism may affect their views regarding healthcare providers.
    D) African American's beliefs regarding God's role in controlling life and death may make them less likely to consider advance directives.

    ISSUES OF DEATH AND DYING: CULTURAL CONSIDERATIONS

    Compared with White Americans, African Americans are also less likely to plan for end of life and use advance directives [84,132]. In one study, white participants were more likely to identify benefits of end-of-life planning, while African Americans were more likely to identify barriers [132]. In a study with Black Americans living in Alabama, older participants reported they were reluctant to talk about end-of-life care planning with health providers [209]. An analysis of a secondary dataset examining racial and ethnic differences in formal and informal advance care planning among U.S. adults found that both Hispanic and Black Americans were 1.77 times as likely to lack advance care plans compared with White Americans [210]. This was also the case with any informal advance care planning.

    Although advance directives, living wills, and power of attorney directives are less common, African Americans tend to choose more aggressive lifesaving interventions than whites [85]. While they are less likely to rely on formal written advanced directive documents, they are more likely to discuss end-of-life issues and planning with family members. Consequently, end-of-life planning for African Americans are more family-oriented, informal, and collectivistic [181].

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    16 . Of the following, which ethnic/racial minority group is the least likely to have an advance care plan?
    A) Alaska Natives
    B) Asian Americans
    C) Native Americans
    D) African Americans

    ISSUES OF DEATH AND DYING: CULTURAL CONSIDERATIONS

    Compared with White Americans, African Americans are also less likely to plan for end of life and use advance directives [84,132]. In one study, white participants were more likely to identify benefits of end-of-life planning, while African Americans were more likely to identify barriers [132]. In a study with Black Americans living in Alabama, older participants reported they were reluctant to talk about end-of-life care planning with health providers [209]. An analysis of a secondary dataset examining racial and ethnic differences in formal and informal advance care planning among U.S. adults found that both Hispanic and Black Americans were 1.77 times as likely to lack advance care plans compared with White Americans [210]. This was also the case with any informal advance care planning.

    Although advance directives, living wills, and power of attorney directives are less common, African Americans tend to choose more aggressive lifesaving interventions than whites [85]. While they are less likely to rely on formal written advanced directive documents, they are more likely to discuss end-of-life issues and planning with family members. Consequently, end-of-life planning for African Americans are more family-oriented, informal, and collectivistic [181].

    Some speculate that African Americans' experiences with institutional oppression, racism, and discrimination play a role in these trends. Examples of medical abuses (e.g., the Tuskegee experiment) may make African Americans more likely to aggressively protect themselves, which manifests as taking steps to prolong life [209]. Experiences of oppression, which are rooted in slavery and the Jim Crow laws, may result in African Americans being fearful of giving up control, particularly to those representing the dominant culture [86]. As with the sociopolitical backdrop of oppression in African American culture, some immigrant and refugee groups who have been politically persecuted and exploited in their home countries may be wary of signing legal documents [87]. Among these groups, advance directives are often viewed with skepticism.

    Another factor in the non-adoption of advance directives is the role of religiosity and spirituality. Some have suggested that the disparity of advance directive use between whites and African Americans may be related to differences in beliefs regarding God's role in controlling life and death [208]. Furthermore, cultural values about individualism/collectivism and future/present orientation appear to influence older individuals. In one study, older White individuals spoke more often about individualism/self-reliance and tended to have a future orientation while their older African American counterparts, who focused on collectivism/interconnectedness and tended to have a present orientation [132].

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    17 . Patient-centered communication consists of
    A) practitioners discussing decisions with the patient first.
    B) practitioners conveying the best course of action as medical experts.
    C) the family making decisions for the patient without his or her knowledge.
    D) group discussions involving the patients and his or her (self-defined) family.

    CULTURALLY SENSITIVE COMMUNICATION STRATEGIES

    Most health communications can be classified as patient-centered or family-centered. Patient-centered communications consist of practitioners discussing decisions with the patient first, emphasizing autonomy and individuality. On the other hand, family-centered communication relies on group discussions involving the patient and his or her (self-defined) family. This type of communication is based on collectivistic cultural values and entails conducting a thorough assessment of the family's cultural, religious, and spiritual preferences and documenting that all members of the team have access to this information [37,182].

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    18 . When interpreters are viewed as neutral individuals who communicate information back and forth, this is referred to as the
    A) cultural brokering.
    B) "interpreter as conduit" model.
    C) patient-centered communication.
    D) All of the above

    CULTURALLY SENSITIVE COMMUNICATION STRATEGIES

    Many view interpreters merely as neutral individuals who communicate information back and forth. This approach to interpretation, common in healthcare settings, is referred to as the "interpreter as a conduit" model. Practitioners adopting this perspective view interpreters as tools to relay information back and forth, discounting their human nature, emotions, and independent knowledge [100]. Consequently, some interpreters feel they are placed in a challenging position because the family may end up getting mixed messages from the various health providers. The interpreter who is viewed merely as a conduit and not an active agent gets caught up in the clash of mixed messages, cultural differences, and general confusion [212].

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    19 . Which of the following is NOT a specific quality that improves end-of-life communications via an interpreter?
    A) Acknowledging that language and culture are different
    B) Allowing enough time with the patient and family members
    C) Keeping all interpretations as close to the original statements as possible
    D) Being aware of personal discomforts that may arise given the sensitive and stressful nature of the encounter

    CULTURALLY SENSITIVE COMMUNICATION STRATEGIES

    In a study conducted with 43 medical interpreters, the participants confirmed that they were active agents in the clinical encounter [103]. In addition, the interpreters identified specific qualities that improve end-of-life communications between practitioners and patients/families who speak different languages. These qualities include [103]:

    • Balancing between interpreting word-for-word versus being an advocate, cultural broker, and/or educator

    • Acknowledging that language and culture are different (i.e., the interpreter and the patient/family members may speak the same language but may not share the same culture)

    • Allowing enough time with family members and the patient

    • Addressing any religious or spiritual issues that arise in the clinical encounter

    • Being aware of personal discomforts that may arise given the sensitive and stressful nature of the encounter

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    20 . Informed consent
    A) is a one-time event.
    B) is not an essential part of healthcare in the United States.
    C) is not usually an area of care affected by cultural differences.
    D) should be a continuous process of evaluating the patient's and family's wishes.

    CULTURALLY SENSITIVE PRACTICE AT THE END OF LIFE: ETHICAL CONSIDERATIONS

    Consent forms are also an essential part of health care and the legal system in the United States. A signed informed consent form indicates that appropriate information was given or communicated and the patient acknowledges having received and comprehended the information and/or agrees with a prescribed course of action [105]. However, in many cultures, consent is not considered to occur until the family has been informed [18]. Informed consent is a process and should not be viewed as a one-time event. Rather, informed consent should be viewed as a continuous process of evaluating what the patient and family want to know and the extent to which they comprehend the information [105].

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