Bringing Hospice to the Latino community

1. Bringing Hospice to the Latino community In the united states

2. Objectives • PROVIDE An OVERVIEW OF Hospice care and the history of dying in the united States • Explore Latino culture related to End of life care • Identify barriers preventing Latino’s access to hospice care • Suggest strategies to increase access to hospice services to improve quality of life

3. Hospice Care Compassionate care by a team of professionals To individuals with a terminal diagnosis and support to families Provided in the patients home To Support the primary care giver with information on symptom management and caregiving Patients determined goals and treatment Includes spiritual, emotional and psychosocial support

4. History of Dying in America Life expectancy 100 years ago was 48 years and today it is 78 years. We will most likely die from an extended chronic illness

5. The paradox • People indicate that they prefer to die at home surrounded by family • 70% of Americans die in some type of facility

6. Death denying cultures “In our culture we do not view death as a continuum of life but rather as an enemy that must be defeated.” -Flaskerud, 2011

7. Cultural orientation American Latino • Individualism • Decisions are made by the Individualism • We control our destiny • A healthy life style gives us control over death • Decisions are made by the family • The core of life is the family • Individuals defer decisions to the entire group

8. Latino’s secrecy Speaking about death will bring harm to the patient Desire little information about prognosis Often seek aggressive treatment at end of life

9. Latino’s Identify common goals for end of life care • Participation of family in the care of the family member • Support to reduce the burden on the primary Caregiver • Spirituality • Holistic, compassionate care of the patient and the family

10. Spiritual life is a source of comfort Belief in God Prayer Life after death Thankfulness for “the gift of Life”

11. Compassion “Compassion, the capacity to empathize with other people’s suffering, is universal and can be felt even in the face of language barriers…Compassion is not about fixing a problem but rather witnessing and “being there” for the one who is suffering (Austerlic, 2009).”

12. End of Life practice • Most older Latino’s prefer non-aggressive care focused on symptom management and comfort • A large majority have not done end of Life planning which puts them at risk for aggressive care • They are less likely to receive hospice care services • Latino’s die more often in a hospital setting than others

13. Barriers to access • Lack of general information about hospice care • Concern with cost and payment for care • Language barriers • Mistrust of the American health care system

14. Comprehensive approach Community Liaison Community Advisory Board Collaboration with organizations Trusted Bilingual Bicultural Community oriented Respected leaders Offer suggestions Provide feedback Support the services Human service organizations Churches Community centers Health care providers

15. Build Relationships Trust Bilingual/Bicultural Education prior to Crisis

16. Language awareness “Caregiving” “Hospice” “Terminal care” Refers to professionals only Family members don’t call themselves caregivers Refers to an institutional setting Has negative connotations Suggest using “Compassionate care” Suggest using “future care”

17. The conversation • Provide time and setting for a family meeting • Be sensitive to their wishes for communicating prognosis and talk of death • Utilize a bilingual person or an interpreter other than a family member • Ask open ended questions to evaluate what they know and what they are open to talk about • Listen for the language that they use to talk about the illness • Listen to their story and repeat it back to them • Ask for permission to share what you know • Be ready to stop when they indicate discomfort with the discussion

19. Cultural Humility Our team of caring hospice providers

21. Important comes in two sizes – yours and mine- Ken Alstad

22. References: • All Saints Day Around the World in Pictures. (2011, November 2). Retrieved from The Guardian: http://www.theguardian.com/world/gallery/2011/nov/02/all-saints-day-around-world#/?picture=381301471&index=8 • Amy Kelley, Neil Wenger, Catherine Sarkisian. (2010). Opiniones: End-of-Life Care Preferences and Planning of Older Latinos. The American Geriatric Society, 1109-1114. • Austerlic, S. (2009, February). Cultural Humility and Compassionate Presence at the End of Life. Retrieved from Markkula Center for applied Ethics: http://www.scu.edu/ethics/practicing/focusareas/medical/culturally-competent-care/chronic-to-critical-austerlic.html • Control, C. f. (2005). Facing Death. Retrieved from Frontline: http://www.pbs.org/wgbh/pages/frontline/facing-death/facts-and-figures/ • Flaskerud, J. (2011). End-of-Life Preparation: Advance Care Planning. Journal of Mental Health Nursing, pp. 720-722. • Hamburg, E. (2002). Evoking the Spirits: Mexico's Annual Mockery of Death. Retrieved from American Hospice Organization. • Jandt, F. E. (2010). An Introduction to Intercultural Communication - Identities in a Global Community. Thousand Oaks: Sage Publications. • Kaldhusdal, M. B. (Director). (2011). Consider the Conversation [Motion Picture]. • Kreling, B. (2010). Latino Families and Hospice. Retrieved from American Hospice Foundation: https://www.americanhospice.org/articles-mainmenu-8/about-hospice-mainmenu-7/519-latino-families-and-hospice

23. References continued • Kreling, B. (2012). Latino Families and Hospice. Retrieved from American Hospice Foundation: http://www.americanhospice.org/articles-mainmenu-8/about-hospice-mainmenu-7/519-latino-families-and-hospice • Kreling, B., Selsky, C., Perret-Gentil, M., Huerta, E., & Mandelblatt, J. (2010, April 24). 'The worst thing about hospice is that they talk about death': Contrasting hospice decisions and experience among immigrant Central and South American Latinos with US-born White, non-Latino cancer caregivers. Palliative Medicine, pp. 427-434. • Latino Outreach Guide . (2006-2007). Retrieved from National Hospice and Palliative Care Organization - Caring Connections. • Marya Cohen, Jessica McCannon, Susan Edgman-Levitan, William Kormos. (2010). Exploring Attitudes toward Advance Care Directives in Two Diverse Settings. Journal of Palliative Medicine, 1427- 1432. • Scott Murray, Marilyn Kendall, Kristy Boyd, Aziz Sheikh. (2005, April 30). Illness trajectory and Palliative Care. Retrieved from BMJ: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC557152/ • Wendi Born, Allen Greiner, Eldonna Sylvia, James Butler, Jasjit Ahluwalia. (2004). Knowledge, Attitudes, and Beliefs about End-of-life Care among Inner-City African Americans and Latinos. Journal of Palliative Medicine, 247-256.