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Nov/Dec 2007

Honoring Cultural Diversity at the End of Life
By Sandra A. Lopez, LCSW, ACSW
Social Work Today
Vol. 7 No. 6 P. 36

Cultural competency matters in all types of social work practice, even at death. Learn why respecting culture means so much to your clients and their loved ones at the end of life.

The end-of-life process is a significant experience for a person who is dying and his or her family, and it can often be challenging for a social worker to provide emotional support during this time. Social workers providing end-of-life care to patients across diverse settings are keenly aware that this phase of life is usually accompanied by intense emotions, the need to make decisions for future care involving family, and coping with anticipated grief and loss issues, among others. Often overlooked in the context of this phase is the importance and influence of culture and how it impacts end-of-life care.

Defining Culture
Culture can be defined as a grouping of individuals who have some sense of commonality with respect to language, values, beliefs, norms, worldview, accepted behaviors, rituals, and practices. Some believe culture deals with the social heritage of a person and is a way of life (Green, 1995). Many believe culture can be passed from generation to generation. Culture can often influence language, identity, dress, music, and food, as well as problem solving and coping with various life circumstances, and goes far beyond race and ethnicity. Culture can be applied to geographic areas of the country, professions, developmental stages of life, socioeconomic status, sexual orientation, religion and spirituality, and institutions and can even be issue oriented, such as drug or gang cultures.

Using the social work profession as an example, many of us have had experiences where you were in a room of helping professionals, and when conversations were initiated, you were able to identify the social workers by the language and terms they used and the values they espoused. Assessing one’s cultural background and values may be challenging for the social worker because individuals may belong to several cultures. The essential ingredient in developing cultural sensitivity is understanding which of a patient’s cultures is the primary influence when they are coping with various aspects of end-of-life care.

Culture and End of Life
Increased attention and study has been devoted to understanding culture as it relates to death and dying (Irish, Lundquist, & Nelsen, 1993; Parkes, Laungani, & Young, 1997; Parry & Ryan, 1995) and in exploring the relationship of culture and its influence on the end of life (Braun, Karel, & Zir, 2006; Braun, Pietsch, & Blanchette, 2000; Kemp & Bhungalia, 2002; Lopez, 2006; and Zapka et al., 2006). Similar to the efforts undertaken to emphasize culture in social work practice, a policy statement in Social Work Speaks recommends that social workers be aware of cultural diversity in end-of-life care practices and beliefs and provide culturally sensitive care.

Given the continued emphasis on promoting cultural diversity and cultural competence, we must examine two important questions: How specifically does culture influence end-of-life care? How can social workers create culturally sensitive approaches in end-of-life care to diverse patients and families?

Major Cultural Considerations and End-of-Life Care
Within the process of providing end-of-life care, cultural factors can significantly influence patients’ reactions to their illnesses and the decisions they make. As a patient and his or her family transitions from point to point in the process of coping with the serious illness, culture may impact key aspects such as the following:

• a patient’s perceptions of health and suffering;

• a patient’s perceptions of death and dying;

• a patient’s perceptions of healthcare providers, healthcare, and hospice;

• accepted healthcare practices and remedies;

• accepted religious and spiritual beliefs, practices, and rituals;

• communication patterns and common forms of expression;

• the role of family, relationships, and family involvement; and

• problem-solving, decision-making, and help-seeking behaviors.

These aspects can be critically important and challenging to the social worker providing end-of-life care. Through the assessment process, social workers must identify the patient’s culture(s) and determine to what degree their cultural affiliations may impact their reactions and decisions and the process of helping. For example, patients may believe that suffering and death are natural in the journey of life. They may emphasize collectivism and view family as a significant part of this process. Patients may have a high regard and respect for authority figures and may defer to the expertise and wishes of the social worker. They may strongly believe in prayer and honor certain patron saints by lighting candles throughout the home. They may shy away from any discussion and formal acceptance of advance directives. Depending on the patient’s cultural frame, there are myriad possibilities of patient and family behaviors and outcomes.

Although all these issues are critically important, studies show that three basic dimensions in end-of-life treatment may vary across diverse cultures: communication of “bad news,” locus of decision making, and attitudes toward advance directives and end-of-life care (Searight & Gafford, 2005).

To Tell or Not to Tell
The passage of the Federal Patient Self Determination Act of 1990 created some significant professional, clinical, and ethical challenges in dealing with cultural and ethnic groups. Truth telling is highly regarded in American society and is clearly reflected through the Patient Self Determination Act, which emphasizes patient informed consent. Many cultures, however, may value nondisclosure rather than full disclosure, especially when it comes to serious illness or death.

In an article about family physicians and cultural diversity at the end of life, Searight and Gafford (2005) cite the following four primary reasons for nondisclosure relating to cultural beliefs:

• Discussion about serious illness or death is disrespectful and impolite.

• Open discussion about serious illness or death may provoke unnecessary depression and/or anxiety in the patient.

• Fully disclosing information about an illness may destroy the patient’s hope.

• Talking aloud about a terminal illness makes it real because of the power of the spoken word.

My Decision, Your Decision, Our Decision
A second dimension in end-of-life treatment that creates challenges is related to locus of decision making. In Western society, individualism and independence are encouraged and promoted. Thus, in healthcare, patient autonomy is supported and valued.

Across diverse cultures, however, there may be greater emphasis on interdependence rather than independence and collectivism rather than individualism. Families that support a collective decision-making process may often take in the information about the patient’s illness and may make decisions regarding treatment with little or no input from the patient. In other instances, patients and families who have high regard and respect for authority may look to the expertise of the healthcare team to make the decision.

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Approximately 15% to 25% of people in the general population have advance directives, and culture plays a major role in the follow-through of advance directives (Pietsch & Braun, 1999). Social workers know that end-of-life care can be complicated by the lack of completion of advance directives. The low rates of completion, especially among non-whites, is often believed to be related to “mistrust of the healthcare system, healthcare disparities, cultural perspectives on death, dying, and suffering, and family dynamics” (Searight & Gafford, 2005).

In addition to these three dimensions, studies have examined cultural beliefs and practices regarding end-of-life decision making (Braun et al, 2000), indicating that other cultural/ethnic groups may be less likely to do the following:

• appreciate autonomous decision making;

• complete advance directives;

• endorse the withholding or withdrawal of life-prolonging treatment under seemingly futile conditions;

• use hospice services; and

• embrace organ donation and autopsy.

Balancing Cultural Sensitivity With Ethical Practice
Honoring cultural diversity at the end of life can also be a balancing act between cultural sensitivity and ethical practice. Supporting patients’ cultural values and beliefs is an important part of “starting with the client.” On the other hand, there may be times when social workers have to use their ethical decision-making skills as they balance respect and acceptance of cultural practices while upholding established federal regulations about informed consent such as the Patient Self Determination Act. Genuine and respectful conversations with patients and families about these dilemmas is essential to exchanging information about cultural differences and creating collaborative partnerships. Demonstrating sincere cultural curiosity will be of tremendous value in furthering understanding of the patients’ cultural values and beliefs regarding end-of-life care.

Guidelines for Honoring Cultural Diversity at End of Life
Providing culturally competent care at the end of life can be a significant undertaking for even the most compassionate, knowledgeable, and skilled social worker. The best place to begin is in examining your commitment to honoring cultural diversity. Showing sincere respect and appreciation for the diverse backgrounds of patients and families forms a natural connection that will contribute to successful engagement and rapport. Developing self-awareness of your cultural identity and your distinct values, beliefs, life experiences, practices, and thoughts surrounding end-of-life care can safeguard against making judgements or imposing your values onto patients and families.

Expanding your knowledge base about diverse cultures is essential to understanding how culture may influence the patient’s reactions, behaviors, and decisions. Social workers have an ethical obligation to seek ways of understanding and appreciating the worldview of patients. Knowledge about diverse cultures may be gained from specific research, discussions with trusted colleagues of certain cultural backgrounds who serve as “cultural brokers,” and taking the risk to ask pertinent questions of the patient and family. As appropriate and accurate knowledge about a culture is obtained, the next step is to reexamine interventions and strategies to determine how we may modify or even reinvent ways of helping that are more culturally sensitive and respectful of diversity.

Providing end-of-life care can be a challenging and rewarding experience for social workers. Cultural awareness and cultural sensitivity are especially important in engaging and working with diverse patients and their families. Culture is a unique aspect of every human being, and it can influence everyone’s life, from birth to death. As practicing social workers in end-of-life care, it is important to recognize that dying is both a personal and cultural experience.

— Sandra A. Lopez, LCSW, ACSW, is a diplomate in clinical social work and a clinical associate professor in the University of Houston Graduate College of Social Work.

Braun, K.L., Pietsch, J.H., & Blanchette, P.L. (Eds.). (1999). Cultural issues in end-of-life decision making. Thousand Oaks, CA: Sage Publications.

Braun, K.L., Karel, H., & Zir, A. (2006). Family response to end-of-life education: Differences by ethnicity and stage of caregiving. American Journal of Hospice & Palliative Medicine, 23(4), 269-276.

Green, J.W. (1995). Cultural awareness in the human services: A multi-ethnic approach. (2nd Ed). Boston: Allyn & Bacon.

Irish, D.P., Lundquist, K.F., & Nelsen, V.J. (Eds.). (1993). Ethnic variations in dying, death, and grief: Diversity in universality. New York: Taylor & Francis.

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Kemp, C. & Bhungalia, S. (2002). Culture and the end of life: A review of major world religions. Journal of Hospice & Palliative Nursing, 4(4), 235-242.

Lopez, S. A. (2006). The influence of culture and ethnicity on end-of-life care. In Katz, R. S. & Johnson, T. A. (Eds.). When professionals weep: Emotional and countertransference responses in end-of-life care. New York: Brunner-Routledge.

Lum, D. (2006). Culturally competent practice: A framework for understanding diverse groups and justice issues (3rd ed). Pacific Grove, CA: Wadsworth.

Parkes, C.M., Laungani, P., & Young B. (1997). (Eds.) Death and bereavement across cultures. New York: Routledge.

Parry, J. K. & Ryan, A. (Eds.). (1995). A cross-cultural look at death, dying and religion. Chicago: Nelson-Hall.

Pietsch, J. H. & Braun, K. L. (1999). Autonomy, advance directives and the patient self-determination act. In Braun, K., Pietsch, J. H., Blanchette, P. L. (Eds). Cultural issues in end-of-life decision making. Thousand Oaks, CA: Sage.

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Searight, H. R., & Gafford, J. (2005). Cultural diversity at the end of life: Issues and guidelines for family physicians. American Family Physician, 71, (3), 515-522.

Zapka, J. G., Carter, R., Carter, C. L., Hennessy, W., Kurent, J. E. & DesHarnais, S. (2006). Care at the end of life: Focus on communication and race. Journal of Aging and Health, 18(6), 791-813.