E L N E C End-of-Life Nursing Education Consortium Module 5: Cultural and Spiritual Considerations in End-of-Life Care Geriatric Curriculum Part 1: Cultural Considerations Objective: To obtain an understanding about culture and its influence on: Caregivers Patients and families Relationships among team members, patients, & families Clinical care at the EOL Decision making at the EOL Changing Demographics Increasingly, health care providers and clients are from different cultural backgrounds If trends continue, by 2050, one in two Americans will claim membership in an ethnic minority U.S. Census Bureau, 2004, "U.S. Interim Projections by Age, Sex, Race, and Hispanic Origin," <http://www.census.gov/ipc/www/usinterimproj/> 1
Culture Defined Socially transmitted values, customs, arts, behaviors, and beliefs that guide a person s world view A system of shared symbols Provides security, integrity, belonging Universal Dominant and non-dominant Constantly evolving World View Includes: Cosmology (what is the nature of the universe and humans relationship to it?) Relationship to nature Social relationships Moral and ethical thinking Beliefs about magic/religion Aesthetics (nature of beauty and art) Components within Culture Ethnicity Race Gender Age Religion and spirituality Sexual orientation Differing abilities SES status Cause of death 2
Ethnicity Belonging to a group characterized by: Literature, art, music Language Social customs Dietary practices Religion Sense of belonging Employment patterns Physical community Race Inherited physical traits that characterize distinct groups of humans Racism: belief that race is the key factor in determining human qualities and abilities, and that one race is superior to another Gender Gender roles Caregiving Patrilineal/matrilineal families Communication patterns 3
Age Subcultures based on age, esp apparent within families Age cohorts have own identity reflected in: Labor force participation Consumer behavior Leisure activities Religious activities Education Values and attitudes Aging in Different Cultures Respect for older adults is common in many cultures Older adults may have diminished status Older adults may feel uncomfortable in collaborative relationships with health care professionals Religion Religious beliefs can influence EOL treatment decisions Death rituals often are defined by religious practices 4
Sexual Orientation Gay, lesbian, and transgender individuals are often stigmatized Unmarried couples do not share the same legal rights as married couples Components within Culture (cont.) Differing abilities SES status Cause of death Assimilation The process of assuming the values and behaviors of the dominant culture 5
Acculturation The process of learning the values of the dominant culture without adopting them Stereotype vs. Generalization A stereotype is an ending point A generalization is a beginning point Galanti, 2008 Ethnocentrism Universal tendency of humans to think that their ways of thinking, acting, and believing are the only right, proper, or natural ways 6
How has culture influenced your care of dying patients? How Culture Influences Death Affects how people view death, and their distress or peace with death Affects social customs, for example, care of the body and mourning rituals Affects how people talk about death Can strain or enhance relationships between care providers and patients/families Affects decision making Cultural Values of the American Health Care System Truth-telling Patient autonomy Personal control 7
Values in Non-European American Cultures Interdependence, especially among family members, rather than a focus on individual autonomy Respectful communication Trust, rather than control Cultural Assessment at the End of Life Communication styles Decision-making Death rituals Religious beliefs Gender age Lipson & Dibble, 2005; Mazanec & Panke, 2010 Cultural Assessment at the End of Life (cont.) Power Historical or political factors Community resources 8
Use of Interpreters Avoid using family members Use trained cross-cultural interpreters or volunteers with health care training Telephone translation services Speak to patient/family (not interpreter) Ask family/patient to repeat what is understood Culturally Sensitive Care: General Approaches Knowledge Careful assessment without stereotyping Respect for diverse beliefs and practices Understanding and honoring one s own values Negotiation When Cultures Clash Clashes occur Suggestions 9
Summary Culture is universal Culture affects EOL decision making Cultural patterns can increase or decrease vulnerability Culture can be a barrier but also an opportunity Part II: Spiritual Considerations at End-of-Life Spirituality Central idea that defines life s meaning and purpose Feeling of connectedness with oneself, others, nature, God Allows people to transcend suffering and despair 10
Religion Expression of one s spirituality through organized, codified beliefs and practices People can be spiritual without being religious Spiritual Assessment -FICA Faith Importance or Influence Community Address Other Questions That Encourage Spiritual Reflection and Response: What is the legacy of your life? What do you still want to accomplish in your life? When you want to feel strength, where/to whom do you turn? What gives you your greatest joy in life? 11
More Questions Tell me about your belief in God As you look over your life, what are your regrets? For what are you hopeful? What do you believe will happen after you die? Spiritual Distress Spiritual or existential struggle within which there is potential for growth. Spiritual Interventions Therapeutic presence Compassion without exhaustion Prayer, spiritual readings, spiritual rituals Opportunities for life review 12
Life Review: Seeking Meaning in Life and Death Encourages a person to review his/her life, and come to grips with the good and bad Confirms the uniqueness of each person s life through story-telling Life Review with Those Who Have Dementia Possible with the input of others Everyone s life has a story to tell Spiritual Interventions Encouraging patients to use their spiritual strengths Making referrals to chaplains and other spiritual caregivers 13
The Role of Chaplains and Other Spiritual Caregivers in EOL Care Consistent presence Assisting in meaningmaking Encourage reconciliation Support at death Follow-up after death Summary Spirituality is an essential part of EOL care Supporting the dying person and family by accepting them and being present can help relieve suffering and bring peace at EOL Puchalski et al., 2009 14