Hospice and Palliative Care Considerations in
Native American Communities
San Diego Eye Bank
Educational Symposium
Wednesday, September 12, 2012
Group Activity
Objectives
1.
Appreciate the diversity of the Native
American population in the region and
nationally
2.
Understand the layers of government to
government relationships at it pertains to
hospice and palliative care medicine
3.
Consider the cultural diversity and trust issues as
it pertains to their Native American beliefs and
as it pertains to end of life/donation
Diversity of AI and AN
Indian Health Today
 Approximately 4 million AI/AN in US
 Greater than 60% live in cities
 1.2 million are under 18

http://www.nlm.nih.gov/medlineplus/nativeamericanhealth.html#cat1)www
Diversity of Native Americans
 Over 520 federally recognized tribes inhabit the
contiguous US
 Federal recognition is transient and granted
based on documentation
 Over 350 distinct dialects/traditions exist
amongst tribes that are co-located
Diversity of Native Americans:
California
 There are over 105 federally recognized tribes in
Southern California
 19 tribes are located in San Diego County
 There are approximately 30,000 Native
Americans in Southern California
 Tribes range in size from 20 to 2000 enrolled
members
Diversity of Native Americans:
California

BARONA BAND OF MISSION INDIANSLakeside, CA 92040

CAHUILLA BAND OF MISSION INDIANSAnza, CA 92539

CAMPO KUMEYAAY NATIONCampo, CA 91906

CHEMEHUEVI INDIAN TRIBEHavasu Lake, CA 92363

EWIIAAPAAYP BAND OF KUMEYAAY INDIANSAlpine, CA 91903

INAJA-COSMIT BAND OF INDIANSEscondido CA 92025

JAMUL INDIAN VILLAGE - A KUMEYAAY NATIONJamul, CA 91935

LA JOLLA BAND OF LUISENO INDIANSPauma Valley, CA 92061

LA POSTA BAND OF MISSION INDIANSBoulevard, CA

LOS COYOTES BAND OF CAHUILLA & CUPENO INDIANSWarner Springs, CA 92086

MANZANITA BAND OF THE KUMEYAAY NATIONBoulevard, CA 91905

MESA GRANDE BAND OF MISSION INDIANSSanta Ysabel, CA 92070

PALA BAND OF CUPENO INDIANSPala, CA 92059

PAUMA BAND OF LUISENO INDIANSPauma Valley, CA 92061

RINCON BAND OF LUISENO INDIANSValley Center CA 92082

SAN PASQUAL BAND OF INDIANSTemecula, CA 92592

IIPAY NATION OF SANTA YSABELSanta Ysabel, CA 92070

SYCUAN BAND OF THE KUMEYAAY NATIONEl Cajon, CA 92019

VIEJAS BAND OF KUMEYAAY INDIANSAlpine, CA 91901
Understand the layers of government to
government relationships at it pertains to hospice
and palliative care medicine.
Government to Government
Relationships
Government to government
relationships and Hospice and
Palliative care medicine.
“Health Services provided by the federal
government for Indian people are not a gift.
They are the result of business arrangements
between two parties that resulted in a prepaid health plan. The health plan was
prepaid by cession for their entire lands….”
(Rhoades and Deersmith 1996)
Government to Government
Relationships: Origins of Indian Health
Service
 Provision of health care is established
within treaties, the Constitution, and
federal statutes
 1849 Bureau of Indian Affairs began
providing health care to Indian Tribes
 1921 Snyder Act authorizes
appropriations for health services
 1955 responsibility for Indian Health
care transferred from BIA to newly
created Public Health Service entity:
Indian Health Service
Government to Government
Relationships: Origins of Indian
Health Service
Origins of Indian Health Service
 1975 Indian Self-Determination and
Education Assistance Act (Public Law
93-638) authorizes tribes to assume full
responsibility for BIA and IHS programs
 1976 Indian Healthcare Improvement
Act mandates consultation with tribes
to address needs
Government to Government Relationships:
Origins of Indian Health Service
Indian Health Council, Inc.
2012
Indian
Health
Service
TRIBES
Blue
Cross
NIH
Over
22
Grants
San
Diego
County
Health Care Delivery Systems:
Indian Health Council
 Indian Health Council Overview
• Non profit 501 (3)c organization
• Services 9 tribes in the northern San Diego
•
•
•
•
County (Tribal Consortium) (n=5000)
20,000 visits/year
Operates under Public Law 638 funding
Grants provide up to 22% of other gap
funding not provided by Indian Health
Service
Annual Budget 19 million dollars
Government to Government
Relationships:
Indian Health Service dollars
IHC - 2010
PAYOR MIX AT IHC 2010
2%
6%
10%
2%
Uninsured Native American
Private Insurance
5%
Medi-Cal
51%
Medicare
Medi-Medi
EAPC
Self Pay
11%
Other
13%
Insurance Coverage for AI/AN
Nationally
Insurance Coverage
 2006
 36 % of American Indians and Alaska
Natives had private health insurance
coverage
 24 % of AI/ANs relied on Medicaid
coverage
 33 % of AI/ANs had no health insurance
coverage in 2007
(http://minorityhealth.hhs.gov/templates/browse.aspx?lvl=2&lvlID=52)
Indian Gaming and Health Care
Gaming/Health Care and AI/AN
2009 Gaming Statistics
 More than 24.5 million Americans
visited Indian casinos
 Nationwide, there are 237 Indian
tribes in 28 states involved in
gaming
http://www.articlesbase.com/art-and-entertainment-articles/the-importance-and-facts-about-indiangaming-3419982.html#ixzz121HopWIC
Gaming/Health Care and AI/AN
 26 billion in gross revenue
 3.2 billion in gross revenue from
related hospitality and entertainment
services
 628,000 jobs nationwide for American
Indians and their neighbors
Health Disparities
Life Expectancy in Years:
 U.S. Men 74.1 years
 U.S. Women 79.5
 79 Years in the General Population
 72 Years in the AI Population
AI Resource Disparities
Per Capita Medical Expense in 2005 Federal
Budget:
Medicaid Recipients
$5,010
VA Beneficiaries
$5,234
Medicare
$7,631
Bureau of Prisons
$3985
Indian Health Services
$2,130
Cultural Diversity and Trust
Relationships in End of
Life/Donation
Take Home Messages
“It is all about the language and
timing – and talking with people
in a way that gains trust and
understanding” (Domer, MD, Fort Defiance. 2007)
Native American Donors: Rule of
1’s
 Less than 1% of organ transplants performed on
American Indians/Alaskan Natives
 1% of all candidates waiting for transplant are
AI/AN
 1 in 3 AI/AN are likely to donate
 1/2 of organ transplants came from living donors
Source: HRSA U.S. Organ Procurement and Transplantation Network (OPTN). Based on OPTN data as of July
16, 2010.http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp*
Beliefs Concerning Organ
Donation
 Type II Diabetes highly prevalent in AI/AN
 Renal Replacement Therapy Access Increasing
 Natives were inclined to donate if:
 approached by a Native health worker


If they had signed a donor card
If the knew someone with diabetes
(Danielson, BL, J. Transpl Coord. 1998)
Waiting List: Trust and Organ
Donation
 Native Americans account for 1% of patients on
transplant lists
 Willingness to be live donor (81%) greater than a
donating after death (54%)
 In interventions designed to educate-Advisory
Councils/Groups as Cultural Experts were useful
 Adapted Community Specific Evaluation Tools
were key
(Fahrenwald NL, et al, South Dakota State University)
U.S. Transplant Waiting List
Candidates by Race/Ethnicity
Organs
# of AI/AN
candidates
AI and
AN%
of all
# of White
candidates
White% of
all
candidates
candidates
All Organs
1,029
1%
49,031
45%
Kidney
904
0.8%
33,037
31.7%
Liver
99
0.1%
11,191
10%
Heart
5
0.005%
2,177
2%
Lung
4
0.004%
1,433
1.3%
(Source: HRSA U.S. Organ Procurement and Transplantation Network (OPTN). Based on OPTN data as of July 16, 2010.
http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp*)
U.S. Transplant Waiting List
Candidates by Race/Ethnicity
2009
2008
2007
2006
2005
% of total 2009
AI/AN
198
225
181
222
185
0.7%
White
17,322
17,019
17,576
18,061
17,821
61%
Total
Transplants
28,463
27,965
28,639
28,941
28,116
Source: HRSA U.S. Organ Procurement and Transplantation Network (OPTN). Based on OPTN data as of
July 16, 2010.
http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp*
transplants
Cultural Diversity and Trust
Relationships
 Historical Trust issues in Government to
Government Contact
 Department of War
 Bureau of Indian Affairs
 Indian Health Service
Cultural Diversity and Trust
Relationships
 Perpetuated Beliefs of Genocide
 Myth versus Fact
 Small Pox Blankets?
 Procedure without consent
Cultural Diversity and Trust
Relationships
 University sponsored research
 Havasupai Indian 200 blood
samples
 1990s lawsuit between the tribe
and researchers to study diabetes
 Havasupai tribe members allege
the samples were then used for
other unauthorized research
 Violation of the Havasupai’s beliefs
with research on schizophrenia and
inbreeding
Cultural Diversity and Trust
Relationships
 Violation of Traditional Belief
 Fear of discussing terminal illness may
support its realization (Hepburn 1995)
 Advance Directive and DNR not
consistent with belief system
 Western biomedical models conflict
with traditional values (RCT) (Carrese
1995)
Cultural Diversity and Trust
Relationships
“wide range of beliefs and behaviors within
tribes due to factors such as
acculturation and religious affiliation….
Remember that the patient is an
individual who might subscribe to some,
none, or all of [these].” (Van Winkle
2000)
Van Winkle 2000: Van Winkle N. End-of-Life decision making in American Indian and Alaskan
Native cultures.
Cultural Diversity and Trust
Relationships
• Western medical beliefs may
conflict with culture
• Maintain respect and
consistency with cultural beliefs
• Negotiate goals of care
(Baldridge, 2007)
Cultural Diversity and Trust
Relationships
 Providers should bring no assumptions
whatsoever to end-of-life discussions
 Empathy - single most important quality to bring
to end-of-life care
Cultural Diversity and Trust
Relationships: Other
Considerations
 Death is pervasive throughout the
community
 Stoicism by family or patient may be
misinterpreted and feeds distrust
 Humor may be used as coping
mechanism
 Food/Social Interaction plays a
central role at this time
Cultural Diversity and Trust
Relationships
 “Common” End-of-Life Practices
 Many mixed with Catholicism due to
Spanish influence
 May include a “burning of the
clothes”
 May include an all night wake with
singing/tobacco use
 May include Christian-like burial
 Grief Reactions may be hampered
Approaches to End of Life
Care/Donation
 Determine tribal affiliation and degree of
acculturation
 Determine primary and secondary language
 Determine level of education
 Do not interrupt patient; permit pauses
 Consents/Decision making is often family driven
 Discussion of terminal illness should include
patient and family with respect to culture
Factors for Success
1.
2.
3.
4.
Be Proactive
Be Invested in the Community
Be a Team Member and use MDS
Be part of a Team that is
personally invested
chronicdisease.org/Dave Baldridge
Hospice and Palliative Care
Considerations: Summary
1.
Native American population
regionally/nationally is widely diverse.
2.
Government to government relationships
exist but should not hamper delivery of
hospice and palliative care medicine to
these populations.
3.
Considerations of the cultural diversity and
trust issues is important when addressing
end of life/donation.
A Short Story
References
1.
Baldridge, David. Moving Beyond Paradigm
Paralysis: American Indian End-of-Life.
2007.www.chronicdisease.org
2.
Hampton, James. End-of-Life Issues for American
Indians: A Commentary. Supplement to Volume 20.
No. 1, Spring 2005.
3.
Lavato, T. Personal Interview. August 1, 2012.
4.
Giambuzzi, G. Personal Interview. August 28, 2012.
5.
Thomas, Evan. The Case for Killing Granny.
Newsweek. Sept. 12, 2009.
6.
www.minorityheatlh.hhs.gov/templates/content