Attitudes and Beliefs of End-of-Life Care Among Blackfeet Indians.

Disparity in hospice use threatens optimal quality of life during the final stage of life while American Indians/Alaska Natives may not be aware of hospice benefits. Our established Blackfeet members and Montana State University collaborative team conducted a modified Duke End-of-Life Care Survey (8 sections with 60 questions) to assess a baseline end-of-life values, beliefs, and attitudes of Blackfeet individuals. In this manuscript, we present the results of 3 sections with 28 questions: Preference of Care; Beliefs About Dying, Truth Telling, and Advance Care Planning; and Hospice Care by examining overall and generational differences. Most participants (n = 92) chose quality of life over quantity of life with using various devices if they had an incurable disease (54-82%), would want to know if they were dying (92%) or had cancer (89%), but had not thought or talked about their preference of end-of-life care (30% and 35% respectively). The results portray understandable cultural context as well as generational differences with personal variability. While an affirmative shift towards hospice was emerging, dissemination of accurate hospice information would benefit people in the partner community. In conclusion, an individual-centered approach-understanding individual need first-may be the most appropriate and effective strategy to promote hospice information and its use.

Development of the Blackfeet Community Hospice Project: Pilot Workshop.

Taboo perception on talking about death and dying among American Indians/Alaska Natives is prevalent. This suppressive value makes hospice introduction difficult, leading hospice disparity. Working together by using a community-based participatory research approach over a decade, we conducted a 6-hour workshop including information sharing and group activities. The purpose of the study was to investigate the community readiness for end-of-life knowledge by conducting a public workshop. We used pre- and post-workshop surveys with Likert-type responses to five questions to assess the effect of workshop in end-of-life knowledge. Thirty individuals participated the workshop; 80% of them reported their knowledge increase on at least one question. While the survey had concerns, positive participant responses indicated readiness and appropriateness to use workshops to increase end-of-life knowledge.

Moving Toward Openness: Blackfeet Indians' Perception Changes Regarding Talking About End of Life.

This study was conducted to examine cultural appropriateness and readiness for the Blackfeet people in the United States talking about end of life. In the past, a taboo perception of Blackfeet traditional belief in end-of-life discussion was identified as a core barrier for hospice use. However, a recent anecdotal increase in hospice interest triggered the research team to investigate community-wide interest as well as traditional appropriateness of hospice introduction. The community-based participatory research approach was used to conduct the study. Using convenience sampling, we interviewed 10 tribally recognized Elders and surveyed 102 tribal members who were over 18 years old using a modified Duke End-of-Life Care Survey. Here, our report focused on the perception changes on end-of-life discussion. The elders' statements were divided into two, saying that an end-of-life discussion was not against tradition and that sickness and death would break the living spirit, thus no such discussion. Despite, the importance of a family gathering and the need for knowledge about end-of-life care were confirmed. The survey (response rate 100%; n = 92) showed that 90% of the respondents thought dying was a normal part of life and 76% felt comfortable talking about death. In conclusion, there was a shift in the Blackfeet Indians' attitude toward end-of-life discussion from reluctance to at ease. Recommendations specific to the Blackfeet-related entities are presented.

End-of-life treatment decision making: American Indians' perspective.

This study explored American Indians' end-of-life experiences in treatment decision making. Scarce knowledge about this population's perspective regarding end-of-life treatments has resulted in health care providers (HCPs) functioning at less than optimum levels. Using a community-based participatory research approach, open-ended interview data were collected and analyzed using a grounded theory method. Patient and family participants generally stated that the physicians made the treatment decisions for them, while HCPs believed that patients participated in informed autonomous treatment decision making. Both parties (HCPs and patients and families) were not aware of American Indian's psychological aspect that interfered with the exercise of the right of informed consent. This additional understanding would benefit them in order to result in ethically and legally sound practice of patient's autonomous treatment decision making.