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The Evolution of Palliative Care within the 

American Indian Health System 
Judith Salmon Kaur and Blythe Winchester 

*Corresponding author’s email: kaur.judith@mayo.edu 

ABSTRACT 
Palliative care is now considered an important quality component within cancer care and essential to 

the continuum of cancer care programs nationwide.  American Indian and Alaska Native patients have 

significant differences in mortality from various cancers, and therefore palliative care is very important 

while working in parallel towards improved survival overall. In fact, palliative care has in some 

circumstances even contributed to improved survival (Annual report to the Nation on the status of 

cancer 1975-2009. DOI:10.1093/jnci/djs491). This article recounts the efforts made over many years to 

institute quality palliative care programs that are culturally acceptable to Native populations and outlines 

“next steps”. 

KEYWORDS: Palliative care, American Indians, Alaska Natives 

 

Citation: Kaur JS and Winchester B (2018) The evolution of palliative care within the Indian health system. 

Research Reports 2:e1-4. doi:10.9777/chd.2018.10006 

 

 

 



 
 
 
 
 

 

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INTRODUCTION 

The Institute of Medicine produced two 

substantive reports, one in 1997 and the other in 

2001, which outlined deficiencies in the provision 

of palliative care for persons with life-threatening 

illness, including persons suffering with cancer 

(National Academy of Science, 1997; Institute of 

Medicine and National Research Council National 

Cancer Policy Board, 2001). Both IOM reports 

highlighted the fact that minorities suffer 

disproportionately from the lack of provision of 

quality palliative care. 

Within the American Indian and Alaska Native 

(AI/AN) populations the incidence of chronic 

diseases such as cancer, heart disease, 

cerebrovascular disease and diabetes mellitus are 

rising rapidly, and are now the leading causes of 

disability and mortality in this population (Indian 

Health Service, 2005). AI/AN populations have 

access problems to health care related to high 

rates of living in primarily isolated rural 

communities and having high rates of being 

uninsured. It is poorly understood that the Indian 

Health System (IHS) is not actually insurance 

(Kitzes and Domer, 2003; Gorospe, 2006).  

Due to these issues and others, AI/AN’s with 

cancer often present to the health care system at a 

later stage than do NHW’s, and those AI/AN’s 

diagnosed with cancer suffer the poorest survival 

of any ethnic group (National Cancer Institute, 2018; 

National Cancer Institute, 2016).  

Beginning in 2001, several national and regional 

seminars in palliative care have been offered to 

practitioners who care for the AI/AN population. 

The Indian Health Service sponsored 3 national 

palliative care conferences, from 2001 through 

2003, at which one team of health care providers 

(consisting of physician, nurse and one of the 

following: social service, psychologist, spiritual 

counselor, or pharmacist) from each IHS area 

attended with the expectation that they, in turn, 

would train their colleagues. The Alaska Palliative 

Care Symposium, sponsored by the Alaska Native 

Tribal Health Consortium held annual events since 

2005. Additionally, palliative care content has been 

incorporated into several conferences sponsored 

by the Spirit of EAGLES Program, including the 

CDC Comprehensive Cancer Leadership Institutes 

for Tribes. 

In 2004, the Spirit of EAGLES Program (an NCI 

funded Special Population Network), under the 

leadership of a Native medical oncologist who also 

was board certified in palliative care and hospice 

(co-author JSK), performed a needs assessment for 

palliative care within the Indian Health System 

(Michalek, et al., 2005). Among the 10 suggestions 

related to the findings of the report were: 

“Education programs should be instituted and 

sustained, especially in pain management.” As a 

part of this needs assessment, a survey of tribal 

health directors was commissioned by the Spirit of 

EAGLES to assess available and desired services 

related to palliative care. Over 50% of responding 

tribal health directors reported an urgent level of 

need for palliative services such as pain 

management (70%), advanced care planning 

(58%), care for the dying (53%), hospice contracts 

(54%), and bereavement support (52%).  

Conversely, a high percent of palliative care 

services were either not available, or available only 

outside of the local community (e.g., care for 

dying 53%; pain management 44%; respite care 

48%; advanced care planning 44%; hospice 

services 42%) (Indian Health Service, 2006). In a 

national survey undertaken by the National Indian 

Council on Aging (NICOA) and the National Senior 



 
 
 
 
 

 

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Citizens Law Center (NSCLC), among the least 

available long term care services reported by the 

tribes was hospice care, and chronically ill elders 

were frequently reported as not having home care 

needs met adequately (Petersen, et al., 2006). 

In response to the documented need for 

improvement in access and quality of palliative 

care within the Indian Health System, the Indian 

Health Service (IHS) has undertaken a multi-

pronged approach to foster positive change. One 

component of the effort is to educate health care 

providers within the Indian health system to 

improve knowledge, attitudes, and skills in the 

provision of palliative care.  The DVD sponsored 

by the National Cancer Institute is known as EPEC-

O (Education in Palliative and End-of-Life Care for 

Oncology) with American Indian and Alaska Native 

Cultural Considerations) was used for multiple 

trainings of Indian Health Service teams at Mayo 

Clinic with an “Intensive Case-based Training for 

Indian Health”  from 2010- 2012.  In 2014 a webinar 

series was hosted by Blythe Winchester, M.D. with 

over 500 participants including physicians, nurses 

and allied health professionals. These programs 

were designed to fill gaps between current and 

desired practice to relieve suffering.  The 

overwhelming response to the webinar series 

shows the perception that education in palliative 

care is recognized as a need to improve overall 

quality care within the Indian Health System.  

Also, cross cultural approaches involving 

traditional healers have been valuable since 

indigenous patients will often consult with their 

traditional people for ceremonies and medicine to 

help them heal or cope with their illness.  A 

traditional health model helps the person focus on 

their cultural roots for meaning, purpose, and 

acceptance of health and wellbeing.  With a 

renewed sense of empowerment, the holistic 

approach becomes a self- determined end of life 

care plan. Approaches using traditional 

approaches were presented at the Spirit of Eagles 

National Conference held in Niagara Falls, NY on 

Sept. 21-24, 2017.   

A pre-conference workshop was also held in 

Niagara Falls dedicated to palliative care issues 

across AIAN populations.  Over 60 

multidisciplinary specialists and students attended. 

As noted previously, Alaska has been a true leader 

in the endeavor to provide palliative care to the 

Alaska Native population to overcome barriers 

associated with the huge geography and remote 

nature of villages there.  A team from Alaska 

shared models of services to underserved patients 

with advanced serious illness, including cancer.  

Tools and resources were provided to educate and 

equip a broad variety of healthcare providers 

through the Alaska Tribal Health System 

particularly where palliative care resources are 

limited.  The ANTHC group has also developed a 

framework on advance care planning tools for 

culturally diverse populations in urban and rural 

regions.  

Project ECHO ( (Extension for Community Care 

Outcomes) is funded by the Agency for Health 

Care Research Quality (AHRQ) funding has 

included telehealth to train in palliative care best 

practices and involves several Indian Health 

Service sites including Alaska and New Mexico.  

(https:healthit.ahrq.gov/ahrq-funded-projects/) 

Next Steps: 

1. Now that Palliative Care is recognized within 

IHS as an educational and clinical need within 

the system, ongoing programs should be 

available 



 
 
 
 
 

 

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2. Dr. Winchester will report to IHS and provide 

an internal review of how those perceived 

needs have changed and improved over the 

past decade. 

3. Data from Project ECHO and other programs 

should be disseminated widely within the 

Indian Health System and new programs 

identified and modified to meet local and 

regional needs.  

Acknowledgements 

We thank Lisa Baethke, Coordinator for Native 

Circle for disseminating palliative care across 

tribes. 

 

Conflict of interest 
The authors declare that no competing or conflict of 

interests exists. The funders had no role in study 

design, writing of the manuscript, or decision to 

publish. 

Authors’ contributions 
Judith Salmon Kaur: literature review and manuscript 

preparation. Blythe Winchester: a review of the 

Indian Health Service training to date and co-

presenter at the Spirit of Eagles Palliative Care 

preconference workshop mentioned in this 

manuscript. 

REFERENCES 

Gorospe, E. (2006). Establishing Palliative Care for 

American Indians as a Public Health Agenda. Internet 

Journal of Pain, Symptom Control and Palliative Care. 

4, 2. 

Indian Health Service (2005). The First 50 Years of the 

Indian Health Service: Caring and Curing 

(Washington, DC: Department of Health and Human 

Services). 

Indian Health Service (2006). Guidelines for Palliative Care 

Services in the Indian Health System. 

https://www.uaa.alaska.edu/academics/college-of-

health/nrc-alaska-native-

elders/_documents/ihs_palliative-care-services.pdf. 

Accessed July 16, 2018. 

Institute of Medicine and National Research Council 

National Cancer Policy Board (2001). Improving 

Palliative Care for Cancer: Summary and 

Recommendations (Washington, DC: National 

Academies Press). 

Kitzes, J. and Domer, T. (2003). Palliative Care: An 

Emerging Issue for American Indians and Alaskan 

Natives. J Pain Palliat Care Pharmacother. 17, 201–210. 

Michalek, A., Mahoney, M.C., and Kaur, J. (2005). Palliative 

Care Services: A Survey of Tribal Health Directors. The 

IHS Provider. May, 118–119. 

National Academy of Science (1997). Approaching Death: 

Improving Care at the End of Life- a Report of the 

Institute of Medicine (Washington, DC: National 

Academies Press). 

National Cancer Institute (2016). Building on Opportunities 

in Cancer Research. https://www.cancer.gov/about-

nci/budget/about-annual-plan/nci-plan-2016.pdf. 

Accessed July 16, 2018. 

National Cancer Institute. Center to Reduce Cancer Health 

Disparities:  Examples of Cancer Health Disparities. 

https://www.cancer.gov/aboutnci/organization/crchd/

about-health-disparities/examples. Accessed July 16, 

2018. 

Petersen, W.O., Kaur, J.S., Finke, B., et al (2006). Palliative 

and End of Life Care: Perspectives on Care within the 

Indian Health System. J Psychosoc Oncol. 15, S25. 

 


