Improving Hospice Access and Outreach to the Chinese American Community Sandy Chen Stokes Founder/Executive Director, Chinese American Coalition for Compassionate Care, Cupertino CHAPCA Conference – Santa Clara – October 5, 2012 Sally Adelus President/Chief Executive Officer, Hospice of the Valley, San Jose Monique Kuo, MD Medical Director, Hospice of the Valley, San Jose Victoria Wild Director of Volunteer Services, Hospice of the Valley, San Jose Jeanne Wun Past Chair, Board of Directors, Chinese American Coalition for Compassionate Care
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Improving Hospice Access and Outreach to the
Chinese American CommunitySandy Chen Stokes
Founder/Executive Director, Chinese American Coalition for Compassionate Care, Cupertino
CHAPCA Conference – Santa Clara – October 5, 2012
Sally AdelusPresident/Chief Executive Officer, Hospice of the Valley, San Jose
Monique Kuo, MDMedical Director, Hospice of the Valley, San Jose
Victoria WildDirector of Volunteer Services, Hospice of the Valley, San Jose
Jeanne WunPast Chair, Board of Directors, Chinese American Coalition for Compassionate Care
Objectives
• Identify the common barriers to hospice and palliative care access for Chinese Americans
• Describe the history, mission, and services of the Chinese American Coalition for Compassionate Care (CACCC)
• Describe the innovative model, strategies, collaborative partnerships and programs of the CACCC
• Identify the strategies, tools and resources to implement a program targeting underserved populations
The Need
In 2009, of the 1,020,000 patients who were served by hospice care, only 1.9% of those individuals were Asian despite the fact that national surveys estimate that Asians comprise more than 4.4% of the total U.S. population.
*2010 Edition NHPCO Facts and Figures: Hospice Care in America
The Need Grows
• In 2010, 1,029,000 patients were served by hospice care,
• 2.5% of these were Asian*
• Representing the fastest-growing race group, Asians comprise more than 4.8% of the total U.S. population **
*2011 Edition NHPCO Facts and Figures: Hospice Care in America
**US Census Bureau: 2010 Census Shows Asians are Fastest-Growing Race Group, March 21, 2012
Identifying Barriers to Access
• State and Local
– Hospice of the Valley Survey* Results
– Hospice of the Valley Community Outreach
Survey Results**
*Hospice of the Valley Chinese Family Barrier to Access Survey - May 2006
**Hospice of the Valley Community Outreach Survey (Focus Group and Market Research 2010-2011)
Chinese American Coalition for
Compassionate Care
• History
• Mission
• Services
– Develop resources and materials
– Provide community outreach
– Provide education and training to volunteers,
patients, caregivers, and healthcare providers
– Provide respite and hospice care
�Hospice of the Valley of Northern California
- Volunteer Training Program 2009
�California Healthcare Foundation and Chinese American Coalition for Compassionate Care
– Chinese American Hospice and Palliative Care Volunteer Training Program
– Healthcare Professional Training
Innovative Model: Getting Started
Volunteer Training
• Purpose
• Partner Organizations
1st Chinese American Volunteers Trained in Northern California
Partner Organizations
Volunteer Training
• Compliance, Regulations & Quality
• Volunteer Screening
• Core Training Curriculum
Core Training Curriculum
• History, Philosophy of Hospice and Palliative Care
• Volunteer Responsibilities and Boundaries
• Communication Skills
• Psychosocial Issues and Family Dynamics
• Advance Health Care Directives and POLST
• Spiritual Care
• Ethics
• Pain, Symptom Management and Clinical Issues
Core Training Curriculum
• Death Awareness, Preparation, and End-of-Life Care
• Physical Care and Safe Body Mechanics
• Grief, Loss and Bereavement
• OSHA/HIPAA
• Volunteer Self-Care and Managing Stress
• Documentation
Healthcare Professionals Training
• Background Information on the Chinese Community
– Census Information
– Chinese Dialects
– Religious Affiliations
– Degrees of Acculturation
• Providing Culturally Appropriate Care to Chinese Americans at the End of Life
Healthcare Professionals Training
• Beliefs and Practices of Chinese Americans at the End of Life
– “To Tell or Not To Tell”
– Dying at home or in the hospital
– Myths about Advance Directives
Healthcare Professionals Training
• Other topics covered:– Effective Communication about End-of-Life
Issues
– Using Interpreters Effectively
– Discussing Prognosis at the End of Life
– Talking about Tube Feeding at the End of Life with Chinese Americans
– Discussing Use of Opioids for Symptom Management with Chinese Americans
Training Outcomes
� 17 Agency Partners
� 61 Volunteers completed training
- Northern California: 36
- Southern California: 25
�25 signed with partner agencies
�25 are providing community home visits
�Hospice of the Valley, San Jose CA
Chinese Language/Dialects
0%
20%
40%
60%
80%
100%Mandarin 92%
Taiwanese 42%
Cantonese 33%
Hakka 3%
Taishan 3%
Malaysian 3%
Religious AffiliationBuddhist 47%
Not declared 28%
Christian 14%
Catholic 6%
Buddhist/Catholic/ Christian 1%
Buddhist/Christian
1%
Occupation and Gender
0%
5%
10%
15%
20%
25%
30%
35%
1
Other 33%
Nursing 17%
Homemaker 17%
Retired 8%
Volunteer 8%
Engineer 6%
Student 6%
Not declared 6%Female 83%
Male 17%
Gender
Starting a Program
• Needs Assessment
– Internal and External
– Landscape
– Focus Groups
– Mission and Strategic Plan
Understanding Key Population Facts
• Demographics
• History
• Socio-economics
• Language
• Healthcare practices
• EOL care cultural beliefs and attitudes
• Religion
Resources
• NHPCO Chinese American Outreach and Latino Outreach Guides
• California Coalition for Compassionate Care Needs Assessment 2002-03
• Silicon Valley Latino Report Card 2011• California HealthCare Foundation The
Final Chapter: Californians’ Attitudes and Experiences with Death and Dying, February 2012
Build Community Partnerships
• Assess community demographics
• Recruit a community liaison
• Gather feedback
• Engage community stakeholders and experts– Chinese American Coalition for Compassionate Care
– Pallium India USA
• Integrate cultural competency in organization
• Use culturally appropriate language
• Build trust
Outreach Strategies
• Form a community advisory committee or coalition: Professional Advisory Board; Latino Advisory Committee
• Collaborate with healthcare providers
• Provide education and training on EOL
• Develop and distribute resources
• Cultivate and train volunteers
• Engage media
Community Engagement Resources
• Educational tools
• Professional organizations
• Publications
• Language and translation assistance
• Advance directives
FacultySandy Chen Stokes, Founder/Executive Director
Chinese American Coalition for Compassionate Care
Sally Adelus, President/CEO
Hospice of the Valley, San Jose CA
Monique Kuo, MD, Medical Director
Hospice of the Valley, San Jose CA
Victoria Wild, Director of Volunteer Services
Hospice of the Valley, San Jose CA
Jeanne Wun, Past-chair, Board of Directors
Chinese American Coalition for Compassionate Care
Thank you!
caccc-usa.org
hospicevalley.org
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