Hospice Utilization among American Indians in California

and Arizona

Kyusuk Chung, Ph.D and Ann Jaso, MHACalifornia State University at Northridge and Governors State University

Indian Health Care Improvement Act of 1992as Amended in Oct. 2000 Called for Hospice Feasibility Study (section 205) (1) to assess the feasibility and desirability of furnishing

hospice care to terminally ill Indians; and (2) to determine the most efficient and effective means of

furnishing such care. Not later than the date which is 12 months after October 29,

1992, the Secretary shall transmit to the Congress a report containing—

(1) a detailed description of the study conducted pursuant to this section; and

(2) a discussion of the findings and conclusions of such study.

The Study Should Address: (1) assess the impact of Indian culture and beliefs concerning death and

dying on the provision of hospice care to Indians; (2) estimate the number of Indians for whom hospice care may be

appropriate and determine the geographic distribution of such individuals; (3) determine the most appropriate means to facilitate the participation of

Indian tribes and tribal organizations in providing hospice care; (4) identify and evaluate various means for providing hospice care,

including—(A) the provision of such care by the personnel of a Indian Health Service hospital pursuant to a hospice program established by the Secretary at such hospital; and (B) the provision of such care by a community-based hospice program under contract to the Service; and

(5) identify and assess any difficulties in furnishing such care and the actions needed to resolve such difficulties.

Palliative Care: An Emerging Issue for American Indians and Alaskan Natives by J.A. Kitzes*

Since 1999, efforts at addressing the growing palliative care needs of American Indian and Alaskan Native communities have emerged. Not until 1999, Palliative care has been formally addressed for these communities. The number of palliative care programs in place or being

planned in tribal and IHS sites is not known because there is no central reporting for these programs.

the first national IHS conference on end-of-life care in 2001

the first IHS National Palliative Care Training conference in 2002

Palliative Programs Examined by Dr. Kitzes Navajo Reservation at Fort Defiance, Arizona: The IHS

office was planning a full hospice program. Zuni, New Mexico: a tribally-operated home health

agency provides home-based hospice care Anchorage, Alaska: A home health agency established for

tribes provides palliative care. The IHS program at Cherokee, North Carolina has

developed a contractual relationship with the two hospice programs in the area.

*Kitzes, J.A., & T. Domer. 2003.“Palliative Care: An Emerging Issue for American Indians and Alaskan Natives.” Journal of Pain and Palliative Care Pharmacotherapy, 17(3/4): 201-210

Our Study Purpose Examined Hospice utilization rate (# hospice deaths

divided by # deaths) among American Indians in California and Arizona

2010 Census Data American Indian/Alaska Natives 65 and older (One race alone)

California: 29,438 Arizona: 20,023

Chose Arizona because American Indians concentrate. Chose California because many American Indians live but

without concentration.

Data Used CDC’s mortality data of 2010 by race and county Arizona Hospice Utilization Data for 2010

# Patients served by race Hospice Service Area (County level)

California Hospice Utilization Data for 2010 # Unduplicated hospice patients by race # of Patients Served by County of patient’s residence at time of

admission

Measures Dominant versus Non-Dominant American Indian (AI)

Counties: Based on Share of AI population as the percent of Total County

population AI-Dominant Counties, Arizona: If the share of NA population exceeds

8% of the county total population AI-Dominant Counties, California: If the share exceeds 4%

Hospice Utilization Rate: IA-Dominant versus Non-dominant # Hospice Deaths / # Deaths

The Share of Native Americans as Percent of Total Population

Pinal County 8.0%

Gila County 14.8%

Graham County 15.8%

La Paz County 16.1%

Coconino County 29.1%

Navajo County 46.9%

Apache County 75.9%

Madera County 4.1

Lake County 4.4

Mariposa County 4.4

Lassen County 4.5

Modoc County 5.3

Siskiyou County 5.3

Mendocino County 6.4

Trinity County 6.4

Humboldt County 7.1

Del Norte County 8.8

Inyo County 12.3

Alpine County 21.9

Seven Native American Counties, ArizonaTwelve Native American Counties,

California

Pinal 8.0%

Gila 14.8%

Graham 15.8%

La Paz 16.1%

Coconino 29.1%

Navajo 46.9%

Apache 75.9%

Share of Native Americans as

Percent of Total Population

Madera County 4.1Lake County 4.4Mariposa County 4.4Lassen County 4.5Modoc County 5.3Siskiyou County 5.3Mendocino County 6.4Trinity County 6.4Humboldt County 7.1Del Norte County 8.8Inyo County 12.3Alpine County 21.9

Share of Native Americans as

Percent of Total Population

Comparing Hospice Use: AI versus Non-AI areas Hospice Utilization Rate in AI group of counties

# of AI deaths aggregated at AI group of counties # of AI deaths under hospice care aggregated at AI group

Hospice Utilization Rate in Non-AI group of counties # of AI deaths aggregated at Non-AI group of counties # of AI deaths under hospice care aggregated at Non-AI group

of counties

AI-D

omin

ant C

ounti

es (N

=12)

Non-

AI C

ounti

es (N

=46)

AI-D

omin

ant C

ounti

es (N

=7)

Non-

AI C

ounti

es (N

=8)

California Arizona

05

101520253035

14.4

32.1

6.8

26.4

Hospice Utilization Rate in 2010: American Indian Dominant Coutines versus Non-

Dominant CountiesHo

spic

e U

tiliza

tion

Rate

Qualitative Analysis Explored the level of awareness of hospice care among

American Indian caregivers of the Great Lakes Region We interviewed 25 tribal members of the Great Lakes Region,

with 15 residing on reservation lands and 10 residing in metropolitan areas.

Conducted the study from March 2011 through December 2011

Domains and Questions1. Awareness of hospice service on a 5-scale2. Perception of significance/helpfulness of hospice service3. Knowledge about Hospice Core Services4. Cultural beliefs and practices concerning death and the dying

process

Great Lakes Region in Wisconsin

Findings I A majority of interviewees were aware of hospice Our interviews confirmed our quantitative findings: Great

Lakes tribal members residing on reservations reported that no hospice care was available to reservation residents.

Interviewees living on reservations were more likely than those living in metropolitan areas to emphasize the importance of the provision of hospice care respecting Indian culture and beliefs concerning the dying process.

Findings II Training tribal members to deliver hospice services

they feel more comfortable with members of their own tribe Their religious values are regionally diverse Many urban Indians believe differently when off the

reservation, however return to the reservation during the death process.

Grief counseling, before and after death, was asked for and was desperately needed.

Concluding Thoughts: Hospice Model for the tribes Determine the most efficient and effective means of furnishing

such care. identify and evaluate various means for providing hospice care

Agencies or Offices serving residents of Cherokee, NC* Cherokee Good Shepherd Home Health and Hospice Agency, Inc. 71

Admissions; 60 deaths Cherokee Community Home Care and Hospice 11 Admissions; 5 deaths Currently no inpatient beds available; # deaths and hospice use are not large

enough to support an hospice inpatient facility No licensed Agencies or Offices serving residents of Apache, AZ NC regulates hospice industry by certificate of need, while AZ does not. Some tribes are not large to warrant a hospice agency, nor would they

want one.