Cultural Considerations at the End – of- Life
Russell, Sally S
As our society changes and diversifies around us, nurses and professional health care workers become more involved in the lives of patients whose cultures are different and whose traditions seem strange or foreign. This becomes problematic when caring for patients and families during the end-of-life time period, and it causes a need for nurses and health care professionals to be particularly sensitive to the needs and customs for those in their care.
Lipson, Dibble, & Minarik (1996) defined culture as a system of shared symbols that serve as guides for interactions with others. Belonging to a culture and behaving in certain expected ways within that culture provides safety and security as well as a sense of belonging. It must be remembered, however, that culture is fluid and constantly evolves in response to events (Koenig, 1997).
Many people think of culture as being equated with race or ethnicity, but it is much more than that. Race is not specific and is only one portion of an individual’s cultural identity; it is significant because of issues of racism and social beliefs. In addition, someone may be of a particular ethnic group but not identify strongly with that group. Professionals in health care must also be aware that race can cause physiologic differences in genetic makeup, and this can cause differences in abilities to metabolize drugs (Sindrup & Brosen, 1995).
Determining one’s culture has many components that must be considered when caring for a patient and family at the end of life. Gender influences an individual’s behavior as well as the way others interact with him or her. Much of the end-of-life care in the U.S. is administered either by elderly females or by daughters caring for an elderly female. Gender biases in health care are well documented (for example, females are less likely to be prescribed opiods for pain than males are) (Cleeland, Gonin, Hatfield, Edmonson, Blum, Stewart et al., 1994; Vallerand, 1995). Another component of culture is age. Each age group has its own identity and subculture characterized by consumer behavior, leisure activities, religious activities, education, and values and attitudes (Matteson et al., 1997). There are some who consider certain subsets of the older adult population to be at “double jeopardy” because they have both their age and ethnicity causing a diminished status in society. Persons of advanced age seldom complain because they don’t want to be seen as a “bad patient.” Table 1 shows the percentages of older adults by ethnic group.
On the other side of the age gap are children who also tend to have their pain treated poorly by the health care system. There have been misperceptions about children’s ability to feel pain, and there are concerns about the side effects of analgesics (Bernabei, Gambassi, Lapane, Landi, Gatsonis, Dunlopetal., 1998).
People with differing mental and physical abilities often feel alone and ostracized, creating another subset of one’s culture. Cay, lesbian, or transgender individuals also report feelings of stigmatization and may have experienced multiple losses, isolation, or different family systems that influence their present experience.
Religion is a system of faith and worship, while spirituality is the feeling of interconnectedness with a higher power. Some people find a measure of comfort in the rituals associated with their beliefs, which the health care system should encourage patients to continue (Kirkwood, 1993). Financial status also plays a role in all aspects of health care; individuals with an annual income below poverty level have a significantly higher death rate when compared to those with average incomes. End-of-life care may financially deplete families with limited resources as an estimated 25% of families are devastated by a serious terminal illness (Underwood & Hoskins, 1994). Other components of culture are where one lives and works, and the educational level one has attained.
Cultural competent nursing care includes sensitivity to issues related to all of these factors and involves knowledge, attitudes, attributes, and skills on the part of the nurse. Attitudes are derived from the health care professional’s own cross-cultural experiences and education. Nurses must become aware of their own cultural beliefs and values, and how these influence their behavior and attitudes about others. Samples of questions to assess a person’s culture are shown in Table 2.
Cultural Considerations of Communication
Interpreters may be necessary to communicate with someone who does not speak the same language as the health care professionals. Avoid the use of family members if possible. They may interject their own beliefs and values into the interpretations of the conversation. Some family members will be very uncomfortable speaking about personal or medical issues. When using a translator not known to the patient and family, it would be best if there were a meeting between them prior to the interview for some trust to be established. Recognize that some patients will say “yes” to any question asked even when they do not understand. Ask the patient to repeat what was said to verify comprehension (Lipson, Dibble, & Minarik, 1996; Oncology Nursing Society, 1999).
Considering how the patient wishes to be addressed is important for all patients, especially older adults. Many older adult patients report feeling uncomfortable being addressed by their first name and not being given a choice as to how they should be addressed. Observe the patient’s reactions to posturing and space. If the patient backs away, the health care professional may have invaded his or her personal space and be seen as too aggressive. Other cultures have very little requirements for personal space; if the professional is not close enough, it may be viewed as distant and uncaring. Maintaining eye contact in some cultures is viewed as a way to determine trustworthiness, while in other cultures, avoiding eye contact is a sign of respect (Grossman, 2004).
Beliefs Regarding Death and Dying
The health care professional must work to avoid stereotyping behaviors to cultural groups. As stated earlier, some individuals may not identify strongly with their ethnic group, while others may have strong ties to theirs. The following are general statements about the beliefs of certain groups.
Hispanic/Latino. The primary language is Spanish and the predominant religion is Catholic. When communicating, the patient may avoid eye contact as a sign of respect (Grossman, 2004). The family rather than the individual generally makes the decisions. Patients tend not to complain of pain; although, it is more culturally acceptable for women to do so (Villarruel & Ortiz de Montello, 1992). However, vocal expression of grief and mourning is acceptable and expected. After death, the family may wish to attend to the body and to spend time alone with the deceased. Wakes may be prolonged, with Novenas held the day after the person has been buried and for 9 days thereafter.
African-American. The primary religions are Baptist, other Protestant religions, and Muslim. Pain may be reported openly, but there is often a strong fear of addiction. Home remedies are frequently used for symptom management. Elders are held in high regard, so discussing issues with the spouse or eldest family member may be requested. Open displays of emotion are acceptable and common. A strong belief in the afterlife is held.
Chinese-American. Beginning in 1949, religion was outlawed in the people’s Republic of China, and persons who practiced their religion were persecuted. Many at the end-of-life may wish to reconnect with past religious beliefs. A combination of Buddhist and Christian religions are predominant. Eye contact is avoided to award respect. Affection between family members is rarely exhibited in public. “Saving face” is very important, so patients may not report pain because it might seem they are accusing the professional of inadequate care. In addition, they may not disclose information that is private or embarrassing (Grossman, 2004). Family members often request that the diagnosis is kept from the patient because they are concerned that will cause depression. Foods, traditional Chinese medicines, and acupuncture, in combination with modern medicine, are commonly used to treat disease and symptoms (Martinson, 1998).
Native Americans may not openly express their religion, in part due to fears of stigma or fears of prosecution when using items such as eagle feathers or peyote. There are many different tribes with differing belief systems. Family meetings are used to make decisions, while family members may avoid discussing impending death. Mourning is not displayed in the patient’s presence. Avoid eye contact and maintain a respectful distance. Patients may not report pain as stoicism is valued. The use of traditional medicines is common among many of the tribe members. In some tribes, being in contact with the dying or dead is considered a reason for needing cleansing, so some members will avoid contact if possible (Grossman, 2004).
There are many dimensions of culture, including ethnic identity, gender, age, differing abilities, sexual orientation, and religion and spirituality. As culture influences all aspects of life, especially how one deals with illness, end-of-life care, and grieving, nurses must know how to interact with people of various cultural backgrounds and identities. Culturally sensitive care is best provided thorough an interdisciplinary approach, using the gifts that all members of the health care team can offer.
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Sally S. Russell, MN, CMSRN
AMCN Education Director
Copyright American Academy of Ambulatory Care Nursing Mar/Apr 2005
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