Honoring Cultural Diversity at the End of Life
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.
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
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
• 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
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
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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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
Guidelines for Honoring Cultural Diversity at End of Life
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., 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.
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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.
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