1. Hospice and Palliative Care Considerations in Native American Communities San Diego Eye Bank Educational Symposium Wednesday, September 12, 2012

2. Group Activity

3. 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

4. Diversity of AI and AN

5. 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 http://www.nlm.nih.gov/medlineplus/nativeamericanhealth.html#cat1)www

6. 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

7. 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

8. Diversity of Native Americans: California  BARONA BAND OF MISSION INDIANSLakeside, CA 92040 BARONA BAND OF MISSION INDIANSLakeside, CA 92040  CAHUILLA BAND OF MISSION INDIANSAnza, CA 92539 CAHUILLA BAND OF MISSION INDIANSAnza, CA 92539  CAMPO KUMEYAAY NATIONCampo, CA 91906 CAMPO KUMEYAAY NATIONCampo, CA 91906  CHEMEHUEVI INDIAN TRIBEHavasu Lake, CA 92363 CHEMEHUEVI INDIAN TRIBEHavasu Lake, CA 92363  EWIIAAPAAYP BAND OF KUMEYAAY INDIANSAlpine, CA 91903 EWIIAAPAAYP BAND OF KUMEYAAY INDIANSAlpine, CA 91903  INAJA-COSMIT BAND OF INDIANSEscondido CA 92025 INAJA-COSMIT BAND OF INDIANSEscondido CA 92025  JAMUL INDIAN VILLAGE - A KUMEYAAY NATIONJamul, CA 91935 JAMUL INDIAN VILLAGE - A KUMEYAAY NATIONJamul, CA 91935  LA JOLLA BAND OF LUISENO INDIANSPauma Valley, CA 92061 LA JOLLA BAND OF LUISENO INDIANSPauma Valley, CA 92061  LA POSTA BAND OF MISSION INDIANSBoulevard, CA LA POSTA BAND OF MISSION INDIANSBoulevard, CA  LOS COYOTES BAND OF CAHUILLA & CUPENO INDIANSWarner Springs, CA 92086 LOS COYOTES BAND OF CAHUILLA & CUPENO INDIANSWarner Springs, CA 92086  MANZANITA BAND OF THE KUMEYAAY NATIONBoulevard, CA 91905 MANZANITA BAND OF THE KUMEYAAY NATIONBoulevard, CA 91905  MESA GRANDE BAND OF MISSION INDIANSSanta Ysabel, CA 92070 MESA GRANDE BAND OF MISSION INDIANSSanta Ysabel, CA 92070  PALA BAND OF CUPENO INDIANSPala, CA 92059 PALA BAND OF CUPENO INDIANSPala, CA 92059  PAUMA BAND OF LUISENO INDIANSPauma Valley, CA 92061 PAUMA BAND OF LUISENO INDIANSPauma Valley, CA 92061  RINCON BAND OF LUISENO INDIANSValley Center CA 92082 RINCON BAND OF LUISENO INDIANSValley Center CA 92082  SAN PASQUAL BAND OF INDIANSTemecula, CA 92592 SAN PASQUAL BAND OF INDIANSTemecula, CA 92592  IIPAY NATION OF SANTA YSABELSanta Ysabel, CA 92070 IIPAY NATION OF SANTA YSABELSanta Ysabel, CA 92070  SYCUAN BAND OF THE KUMEYAAY NATIONEl Cajon, CA 92019 SYCUAN BAND OF THE KUMEYAAY NATIONEl Cajon, CA 92019  VIEJAS BAND OF KUMEYAAY INDIANSAlpine, CA 91901 VIEJAS BAND OF KUMEYAAY INDIANSAlpine, CA 91901

9. Understand the layers of government to government relationships at it pertains to hospice and palliative care medicine.

10. Government to Government Relationships

11. 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 pre- paid health plan. The health plan was prepaid by cession for their entire lands….” (Rhoades and Deersmith 1996)

12. 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

13. 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

14. Government to Government Relationships: Origins of Indian Health Service

15. Indian Health Council, Inc. 2012

16. TRIBES Indian Health Service NIH San Diego County Blue Cross Over 22 Grants

17. 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

18. Government to Government Relationships: Indian Health Service dollars IHC - 2010

19. PAYOR MIX AT IHC 2010 51% 13% 11% 5% 2% 10% 2% 6% Uninsured Native American Private Insurance Medi-Cal Medicare Medi-Medi EAPC Self Pay Other

20. 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)

21. Indian Gaming and Health Care

22. 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-indian- gaming-3419982.html#ixzz121HopWIC

23. 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

24. 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

25. 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

26. Cultural Diversity and Trust Relationships in End of Life/Donation

27. 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)

28. 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*http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp*

29. 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)

30. 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)

31. U.S. Transplant Waiting List Candidates by Race/Ethnicity Organs# of AI/AN candidates AI and AN% of all candidates # of White candidates White% of all candidates All Organs1,0291%49,03145% Kidney9040.8%33,03731.7% Liver990.1%11,19110% Heart50.005%2,1772% Lung40.004%1,4331.3% (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*) http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp*

32. U.S. Transplant Waiting List Candidates by Race/Ethnicity 20092008200720062005 % of total 2009 transplants AI/AN1982251812221850.7% White17,32217,01917,57618,06117,82161% Total Transplants 28,46327,96528,63928,94128,116 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* http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp*

33. Cultural Diversity and Trust Relationships  Historical Trust issues in Government to Government Contact  Department of War  Bureau of Indian Affairs  Indian Health Service

34. Cultural Diversity and Trust Relationships  Perpetuated Beliefs of Genocide  Myth versus Fact  Small Pox Blankets?  Procedure without consent

35. 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

36. 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)

37. 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.

38. 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)

39. 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

40. 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

41. 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

42. 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

43. Factors for Success 1. Be Proactive 2. Be Invested in the Community 3. Be a Team Member and use MDS 4. Be part of a Team that is personally invested chronicdisease.org/Davechronicdisease.org/Dave Baldridge

44. 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.

46. A Short Story

47. 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