Background
Partnership
The partnership between the tribe and the university was established in 2007 by using principles of community-based participatory research. This community-centered approach engaged both partners in every research step and was conducive to collecting and analyzing data about the experiences of life-threatening illnesses and EOL care. The research team members included health care–related professionals and academic associates from the tribe. Our study was modeled after 6 tribally successful palliative programs in the United States.
Partner Tribe
Forced to locate in a rural area of a frontier state, the partner tribe has suffered financially, physically, mentally, and spiritually since the encounter with Europeans. Despite the presence of an Indian Health Service (IHS) community hospital on the reservation that currently serves about 8000 eligible tribal members, many of them feel abandoned by the US government because of the inadequate health services provided as a result of a limited IHS budget. A lack of entitled health care frustrates them since their understanding of entitlement of health care was the US government's commitment to the exchange of the most of the Indians' land.
The tribal government and health care workers of the partner tribe previously identified the need for hospice care. Efforts to address this need included unsuccessfully applying for external funding for hospice care, hosting a national-level hospice teleconference, and designating a hospice room in the reservation nursing home. However, the overall attitude of tribal members toward EOL issues varied. The potential reasons for the open attitude were an exposure to Christianity and acculturation, which may have contributed to "[dispelling] the notion of the involvement of evil spirits in the death of people."
The negative stigma associated with death was exemplified by a label of "death room" to an area at IHS hospital and the rarely used hospice room at the nursing home that only 2 patients used in 4 years. Instead of using this room, individuals, when desired, went to the nearest cities (120 miles away) for available hospice care, leaving home and family.
American Indian Values and Beliefs Related to Health
The family is a central core contributing to AI values and beliefs. Family, including extended kinships, is a unit of an individual AI's identity, a source of internal and external connections, and a foundation of his/her collectivism ideology. The family provides balance, harmony, and responsibility to the tribal life. Spirituality is another critical concept. It is defined as "a state of mind and heart, being a good person and living in harmony with nature." Ceremonies, including powwows, sweat lodges (ritual steam baths for purification), drumming, prayers, smudging (use of herbal smoke for purification), and so on are ways of honoring or communicating with the people, land, life, and Creator that are in the spiritual realm.
A disease is seen as "a disturbance in the relationship among self, spiritual forces, community, and environment," and a process of regaining a balanced or meaningful relationship among these factors is described as healing in AI medicine. Death itself is a part of life and accepted when caused by accident or war. However, when death is the result of disease, many AIs have difficulty accepting it. This is especially true concerning infectious diseases because these diseases were not recognized until encountering the Europeans.