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End-of-Life Care: The Crossroads Between Ethics and Culture

Monday April 22, 2002
Healthcare professionals need to understand the patient's life 
context and give support so the patient can continue 
his or her valued traditions.
Healthcare professionals need to understand the patient's life context and give support so the patient can continue his or her valued traditions.
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Culture is a learned way of life that provides the context for interpreting experiences and directing actions of individuals and groups. It evolves from generations of dealing with daily challenges of life to achieve a secure and meaningful existence. At the core of culture are values and beliefs that influence all other aspects of life, such as practices relevant to life transitions - birth, marriage, illness, and death. As life ebbs, when biomedical cures are no longer possible, the supernatural and religious/spiritual dimensions of culture increase in significance.
In healthcare, ethical practice is doing what's right or best for one's patient within a given situation. What's right or best should be based on the context of meanings to patients and families, not the practitioners. As caregivers come in contact with different cultural groups, it is important not to assume that there is a universal context of meanings. Rather, there is a need to understand similarities and differences across groups and within the same groups in order to act in a culturally congruent manner. Culturally congruent and competent care supports and preserves those valued traditions that have given meanings to people's lives.
Ethical practice only exists when cultural values, beliefs, and practices of patients are recognized, respected, and supported. Caring requires that practitioners become committed to the concept that patients and families have a fundamental human right to culturally-congruent and competent care. This commitment is fulfilled by developing a body of knowledge and skills in dealing with different and similar cultural groups in healthcare. A practitioner needs to be equally prepared to support an Anglo-American patient who values individual autonomy and a Chinese patient who values family and group harmony in decision-making. Patients and families are coparticipants in making decisions about their care. They are the experts of their culture and practitioners need to work with them in understanding their life context and provide support for achieving continuity of their valued traditions.
Practitioners must be cognizant of their professional and organizational cultures which generally reflect the dominant societal culture. Professional and organizational socialization reinforces the core cultural values of the society where one practices. Hence, there is greater continuity experienced by Anglo-American patients with the organizational/professional culture in the US than for migrants to the culture. Conversely, foreign-trained and ethnic minority practitioners may be able to provide greater continuity for patients from their own culture but their indigenous practices may be incompatible with the cultural values of Anglo-American patients. Ethical practitioners are able to bracket their own values and beliefs, and work with professional, organizational and societal cultural biases that hinder actualization of culturally-congruent care for their patients.
Leininger has identified three action modes to achieve culturally-congruent care1 -
1. Cultural Preservation - maintaining the valued life traditions of people
2. Cultural Accommodation - negotiating with values and traditions when these can not be fully preserved or maintained
3. Cultural Repatterning - changing people's life ways when preservation and accommodation are not possible
Practitioners may use one or all three action modes at the same time. Repatterning is commonly used to change mindsets of practitioners or people in the organizations so that preservation and accommodation can occur. Preserving and accommodating valued traditions generally yield effective actions but require knowledge and skills about the culture involved.
In one hospital, the son of an older Egyptian widow had requested that the physicians and nurses not tell the patient that her diagnosis was terminal cancer of the colon. He agreed with the physician to use the word, "tumor" instead. Truth-telling and informed consent that are considered fundamental individual rights in the Western world are not priorities in cultures where the family and group hierarchy are superimposed upon individual autonomy. The family did not take away the patient's right to know but believed that they were acting in the best interest of the patient by not adding to her worry or despair (beneficence and nonmaleficence).
One of the patient's daughters stayed with her most of the day and gave her hygienic care. When the physician asked the daughter about hospice, she suggested that the MD speak with her brother. The son, who is the primary decision-maker in the absence of his father, did not want hospice care if his mother needed to be informed of her diagnosis. In fact, the patient was discharged without hospice care. The daughter quit her job so she could devote time to her mother's care at home.
Members of this family are devout Muslims who share the belief that only the creator has the power to give and remove life. Hence, prognostication by using the words terminal cancer are considered inappropriate human acts. The patient died shortly after being readmitted to the hospital. Before she died, groups of visitors stayed at her bedside to pray and give her comfort. At the time of death, her son brought an imam who blessed her body and ensured that only female members of the group cleansed and prepared the body for immediate burial. The nursing staff were asked to stay out of the patient's room and not to touch her body.
Cultural preservation was used in respecting the family's wishes not to inform the patient of her terminal condition. Group solidarity rather than patient autonomy was the cultural context of the family. Accommodation was implemented by allowing frequent visits by large numbers of her family, providing gender-congruent care and calling the imam to bless the patient. Repatterning of the staff's views and the organizational policy on hospice could have been implemented to accommodate the family's religious traditions and family obligation of caring for each other.
Transcultural caring is generally possible when practitioners' become sensitized to differences, become open-minded, and are able to restructure the organizational policies and activities to accommodate different ways of life. In most cases, this is the challenge to achievement of meaningful care for patients in situations surrounding end-of-life.