BRINGING HOSPICE TO THE LATINO COMMUNITY IN THE UNITED STATES.
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Transcript of BRINGING HOSPICE TO THE LATINO COMMUNITY IN THE UNITED STATES.
BRINGING HOSPICE TO THE LATINO COMMUNITY
IN THE UNITED STATES
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
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
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
THE PARADOX
• PEOPLE INDICATE THAT THEY PREFER TO DIE AT HOME SURROUNDED BY FAMILY
• 70% OF AMERICANS DIE IN SOME TYPE OF FACILITY
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
CULTURAL ORIENTATION
AMERICAN • INDIVIDUALISM
• DECISIONS ARE MADE BY THE INDIVIDUALISM
• WE CONTROL OUR DESTINY
• A HEALTHY LIFE STYLE GIVES US CONTROL OVER DEATH
LATINO • DECISIONS ARE MADE BY THE
FAMILY
• THE CORE OF LIFE IS THE FAMILY
• INDIVIDUALS DEFER DECISIONS TO THE ENTIRE GROUP
LATINO’S SECRECYSPEAKING ABOUT DEATH WILL BRING HARM TO THE PATIENT
DESIRE LITTLE INFORMATION ABOUT PROGNOSIS
OFTEN SEEK AGGRESSIVE TREATMENT AT END OF LIFE
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
SPIRITUAL LIFE IS A SOURCE OF COMFORT
BELIEF IN GOD
PRAYER
LIFE AFTER DEATH
THANKFULNESS FOR “THE GIFT
OF LIFE”
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).”
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
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
COMPREHENSIVE APPROACH
COMMUNITY LIAISON
TRUSTED
BILINGUAL
BICULTURAL
COMMUNITY ORIENTED
COMMUNITY ADVISORY BOARD
RESPECTED LEADERS
OFFER SUGGESTIONS
PROVIDE FEEDBACK
SUPPORT THE SERVICES
COLLABORATION WITH
ORGANIZATIONSHUMAN SERVICE ORGANIZATIONS
CHURCHES
COMMUNITY CENTERS
HEALTH CARE PROVIDERS
BUILD RELATIONSHIPSTRUST
BILINGUAL/BICULTURAL
EDUCATION PRIOR TO CRISIS
LANGUAGE AWARENESS
“CAREGIVING”REFERS TO PROFESSIONALS ONLY
FAMILY MEMBERS DON’T CALL THEMSELVES CAREGIVERS
“HOSPICE”REFERS TO AN INSTITUTIONAL
SETTING
HAS NEGATIVE CONNOTATIONS
SUGGEST USING “COMPASSIONATE CARE”
“TERMINAL CARE”SUGGEST USING “FUTURE CARE”
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
Ask Open Ended Questions
Listen to their Story
Repeat it back to them for
Clarification
Ask for Permission to Share what you
Know
Clarify that they Understand
CULTURAL HUMILITY
OUR TEAM OF CARING HOSPICE PROVIDERS
IMPORTANT COMES IN TWO SIZES – YOURS AND MINE
- KEN ALSTAD
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
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.