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 CARECOMPASSIONATE CARE BY A TEAM OF PROFESSIONALS

TO INDIVIDUALS WITH A TERMINAL DIAGNOSIS AND SUPPORT TO FAMILIES

PROVIDED IN THE PATIENTS HOMETO SUPPORT THE PRIMARY CARE GIVER WITH

INFORMATION ON SYMPTOM MANAGEMENT AND CAREGIVING

PATIENTS DETERMINED GOALS AND TREATMENTINCLUDES 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 PROGNOSISOFTEN 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 GODPRAYER

LIFE AFTER DEATHTHANKFULNESS 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 APPROACHCOMMUNITY

LIAISONTRUSTED

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/BICULTURALEDUCATION 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 HUMILITYOUR 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.