Elderly American Indians with chronic disease and disability are increasing in number. With a life expectancy of more than 70 years, the elderly American Indians have increased to nearly 10% of the entire Native American/Alaskan Indian population in the last decade. [₉, ₁₀] Parallel with the increase in longevity is the rise of chronic illnesses. American Indians experience disproportionately high mortality and morbidity rates from diabetes as compared to all U.S. races. Their common causes of death are the complications of diabetes, heart disease, chronic liver disease and cancer. [₁₁] With chronic illnesses, more than half of terminally ill individuals experience unrelieved pain and prolonged suffering. [₁₂, ₁₃] Because of limited health care resources, only 6.5 % of American Indian elders receive quality EOL care. [₁₀]] As a result, many American Indian elders suffer so much in the process of dying. If ever long term care is made available, hospice and long term care facilities are usually far from their families and tribal communities.

Elderly American Indians utilize nearly 25% of the Indian Health Service (IHS) health care spending as proof of their increased burden of chronic diseases. [₁₀]] Yet, there is limited number of long term care facilities in tribal communities. In fact, the IHS has never provided for long term care services. Government-funded health insurance in the form of Medicaid remains as the only source of long term care support for the terminally ill American Indians. [₁₄] In 2002, the National Indian Council on Aging (NICOA) identified only 12 Indian nursing homes with a total capacity of 627 beds in the entire United States. [₁₀]] It is estimated that 60-70% of Native Americans living in urban centers have no access to palliative care services that have the expertise to take care for their special needs. [₁₅] Many elderly American Indians are compelled to be institutionalized in long term care facilities outside their tribal communities. In the 2002 NICOA survey, 50% of American Indian elders complain that long term care facilities outside tribal communities lack cultural sensitivity aside from their poor medical services. Suffering is not only limited to the terminally ill themselves. Families of dying patients endure significant financial burden, physical stress and emotional fatigue. [₁₆, ₁₇] Family members who have served as caregivers for the terminally ill patients also have increased chances of developing adverse health effects aside from common depressive symptoms. [₁₈]

In palliative care, the goal is not to prolong or hasten death but to alleviate pain, suffering and alienation in the dying process. In public health terms, this would mean the pursuit of the highest quality of life possible for the dying. There is certainly great potential for pain management, psychosocial support, health care financing and provision of accessible and quality palliative care services to American Indians. Effective palliative care services have been documented to prevent undue stress and psychosocial problems for patients, families and caregivers. [₁₈]

Public health, as a science, can play an essential role in palliative services. Tools in public health such as epidemiology can be used to analyze the problems of the chronically debilitated and terminally ill. Public health policy can contribute in improving health systems that support palliative services. Social and behavioral health projects can be done on a community level to come up with community-based initiatives for the terminally ill and chronically debilitated American Indians.

Elderly American Indians have been disproportionately affected by disease and disability especially in the context of historical trauma. [₁₉, ₂₀] American Indian elders have the highest work disability among racial minorities in the United States [₁₀]]. Even in death, American Indian elders have lower number of available long term care facilities compared to the general population. [₁₀]] In the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), race influenced the quality of medical interventions even for the dying and seriously ill. [₂₁]

Even in advance care planning, American Indian elders are disadvantaged. The U.S. Patient Self Determination Act of 1991 which mandates the use of advance directives is based on western legal principles of patient autonomy and informed consent. [₂₂] Advance directives require full disclosure of possible adverse events such as death or extreme debility in seeking medical care. In the Navajo culture, statements of death and debility are avoided as they are believed to change into reality. Therefore, such statements are avoided in clinical discussions. In a survey by Carrese & Rhodes, 86% of their Navajo informants considered the discussion of advance directives as a violation of their traditional values.[₂₃]

Aside from ethnicity and culture, rural isolation and poverty can place American Indians outside mainstream public services and medical care. Almost 27% of American Indians age 64-74 live below the poverty level without access to transportation. [₁₄]] They are entirely dependent on Medicaid for long term care. This dependence can place many restrictions on elderly American Indians as to their choice of long term care facilities, accommodations and type of hospice services.

Acknowledging the EOL issues of American Indians as a public health priority implies the need for multisectoral collaboration. Public health issues occur within a web of causation where one strategy may not be sufficient to provide all the available solutions. More studies and collaboration with American Indian communities are needed to raise awareness regarding their specific needs and perceptions about palliative care.

There is a need to establish a local Indian healthcare system that integrates culturally-appropriate palliative care services. There is a great need for hospice and long term care services for tribal communities and American Indians living outside their tribal land. [₁₀], ₁₅]] Any long term care or hospice institution must be sufficiently funded on long term basis. Tribal leaders and their political representatives must realize that without sustainable funding, palliative care will not be effective as it is intended.

In communities with limited resources, local volunteers can play essential roles in the delivery of basic EOL services. This was highlighted in Alaskan native communities which organized community-based palliative care services. [₂₄] The Bristol Bay Area Health Corporation, a tribal health organization, integrated palliative care into its primary care services. It organized and trained local volunteers who will provide palliative care in 34 native villages. Instead of the tribal elders dying in institutions miles away from home, locally organized services provided accessible culturally-appropriate and quality palliative care.

Health care providers dealing with American Indians must be keen in addressing EOL issues. It is not enough to be merely familiar with American Indian society. It is wrong to assume that all tribal communities share the same values. In addressing sensitive issues, they must seek assistance from local resources or trained health workers to guide them. Ideally, advance care planning involves step-wise strategies that highlight careful cultural assessment and sincere communication. [₂₅] Through this process, patient autonomy is respected in the spirit of mutual understanding and cultural sensitivity.