Social workers are aware of the importance of building cultural awareness in order to work effectively with people from various racial and ethnic groups. However, the need has increased for social workers to dive deeper and develop cultural competence in relation to specific practice areas, including end-of-life care.

Fueling this need is the fact that communities of color in the U.S. are growing quickly, and will continue to increase substantially over the coming decades.

It’s estimated that by 2050, people of color will constitute nearly 40 percent of the U.S. population ages 65 and older — an increase from 20.7 percent in 2012, according to the U.S. Census Bureau.

Helping families and individuals face end-of-life decisions will involve more than overcoming language barriers or understanding cultural traditions.

According to “Dying in America,” a 2014 report published by The Institute of Medicine, people of color prefer more intensive end-of-life treatments as well as desired lower access to hospice care — which contrasts with the preferences of many white Americans.

These preferences are often tied to whether the culture strongly values individualism or if the decisions of the collective community take precedent.

Suspending Beliefs, Focusing on Strengths

In order to deliver care in a way that is culturally congruent with that of the individual and family being served, social workers must have or be willing to develop a capacity to view different cultural perspectives as strengths, not barriers.

Doing so can be challenging, since Western-based medicine strongly values individualism, said Karen Bullock, Ph.D., professor and head of the Department of Social Work at North Carolina State University.

It’s important to suspend your own beliefs so that you can develop an understanding of perspectives that may be distinctly different from your own, said Bullock, who also is a member of NASW’s National Committee on Racial and Ethnic Diversity (NCORED) and the Social Work Hospice and Palliative Care Network.

“Many cultural groups have preferences regarding how bad news is delivered. For example, they may prefer that the dying person not receive this information first, but rather, someone else such as the eldest son or a tribal leader,” said Bullock, who has written a number of publications on the role of culture in end-of-life (EOL) decision-making, and helped revise NASW’s policy statements on hospice care and EOL decision-making and care.

“Many cultural groups don’t believe in autonomous/individual decision-making, which can be embedded in the laws and policies social workers are often obligated to uphold,” she said. “Collective decision-making is preferred by some ethnic groups.”

Iraida V. Carrion, Ph.D., LCSW, is an associate professor at the University of South Florida School of Social Work who has served on the NCORED. She also helped develop the first version of NASW’s indicators for cultural competence (2007) and the NASW Standards for Social Work Practice in Palliative and End of Life Care. Additionally, Carrion has done research in culturally competent EOL care and the elimination of health care disparities among Latinos. She believes collective cultures have multiple strengths when it comes to EOL care.

“Most collective cultures have a tradition of supporting one another, (which) can make decisions easier since the person who is dying doesn’t have to do it alone,” she said. “The family becomes another area of strength and those nearby usually help, as well as family members from far away.”

“Many also have a strong connection to a faith community and believe that people are responsible for their grandparents and family members, which can be a major strength,” she explains. “The end of life is a time when people often feel alone, but when they have this support, they often do well with EOL decisions and care.”

Understanding Cultural Perspectives

America is a highly diverse nation, with many cultures and subcultures, and social workers cannot be expected to understand all of them, but instead must focus on the populations they work with most closely.

Here are examples of EOL viewpoints held by many members of two of the largest U.S. ethnic and racial groups:

Hispanic

Hispanics (who may refer to themselves as Latinos, Chicanos, or other names) are a large and widely diverse population, and social workers must understand the specific subculture(s) they are working with.

For example, Carrion, who is Puerto Rican, explains that in her native culture all children are typically included in EOL decisions.

For some Mexican Americans, their belief in God, the saints and spirituality has a strong impact on their decisions. Some may reject biomedical interventions because they believe they are offensive to God and the saints, according to the 2013 article, “Good and Bad Death: Exploring the Perspectives of Older Mexican Americans,” which appeared in the Journal of Gerontological Social Work.

African-American

Some African-Americans may not trust the health care system, and African-Americans use hospice at a significantly lower rate than white Americans, as noted in the 2008 article “Barriers to Hospice Use Among African Americans: A Systematic Review,” which appeared in the NASW Press journal Health & Social Work.

Conflicts related to religious beliefs may also play a factor in EOL decision-making among African-Americans.

Enhancing Cultural Competence

Bullock and Carrion suggest some factors to keep in mind when working with individuals and families at the end of life:

• Remember that diversity exists within racial and ethnic communities. Bullock points out that people of the same race can have significantly different views on EOL care. For instance, not all people who self-identify as black are African-American. They may be Haitian-American, West Indian-American or from a number of other cultural backgrounds.
• Don’t begin EOL discussions too soon. Instead begin by understanding an individual’s support system and the strength of their cultural norms, values and beliefs. Questions to ask may be, “Who do you rely on for support or assistance?” “Who has helped you in the past?” “Who else would you like to include in your treatment?” “Is there a religious/spiritual leader you would like to include in your care?” says Carrion.
• When the individual and family seem ready to engage in dialogue about EOL care, make sure they have a basic understanding. Many people do not understand the purpose of and need for advance directives, even when the concept is explained to them. Others may not have heard the term “hospice” and may need to get familiar with the concept.

Recognizing the Breadth of Cultural Identity

Although understanding commonly held perspectives within specific racial and ethnic communities can be helpful, great cultural diversity exists within each community.

For example, Bullock points out that more people are migrating to the U.S. at older ages. She has found that many young people from other nations who attend college in the U.S. remain in this country for their professional careers and may later bring their older parents to the U.S. to live with them.

While the younger generation may have adopted U.S. customs, many of their parents have not, particularly when it comes to issues relating to the use of technology to assist in care. This can have a strong impact on EOL care and the family.

“It can be very challenging for practitioners to work effectively with older adults of diverse backgrounds, if they are not incorporating flexible models of care to accommodate these differences,” Bullock said. “Furthermore, we need to engage in research that explores culturally specific models of care.”

Moreover, race and ethnicity are but two aspects of cultural identity. Other permutations of culture include, but are not limited to, gender identity and expression, physical and cognitive ability, sexual orientation, religious or spiritual beliefs, and military or veteran status. These cultural identities can influence EOL decision-making and how an individual defines the “family” involved in EOL care.

Fostering a Broader Dialogue

Taking active steps to deepen cultural competence is vital to improving EOL care. But it is also an opportunity for social workers to help lead the way and foster national dialogue about a critical topic that many find difficult to discuss. As the IOM report “Dying in America” states:

“The controversy on this topic and the political desire to avoid it do not alter the fact that every person will face the end of life one day, and many have had hard experience with the final days of a parent, a spouse, a child, a sibling, another relative, or a dear friend. At a time when public leaders hesitate to speak on a subject that is profoundly consequential for the health and well-being of all Americans, it is incumbent on others to examine the facts dispassionately, assess what can be done to make those final days better, and promote a reasoned and respectful public discourse on the subject.”

“I think the environment around EOL care is improving,” Carrion said. “We have end-of-life standards, more tools, and we are realizing as a society that everyone can’t think the same and everyone cannot be or does not want to be an independent decision-maker.”

Bullock agrees that there is positive momentum and the future looks bright. “We, as social workers, are committed to identifying and incorporating models of care that honor and respect cultural differences,” she said. “Increasingly there is awareness of this need to infuse cultural competence in the care we provide.”

More information

• Download the recently revised NASW Standards and Indicators for Cultural Competence in Social Work Practice {needs link on new site when available}
• Review the NASW Standards for Social Work Practice in Palliative & End of Life Care {needs link on new site when available}

Note: In 2012, Carrion and Bullock co-authored “A Case Study of Hispanics and Hospice Care.” It appeared in the International Journal of Humanities and Social Science.