advance directives, American Indian, community-based participatory research



  1. Isaacson, Mary J. PhD, RN, CHPN


Many American Indian tribes' traditional philosophy of death is one of realism; death is a part of the cycle of life. Yet, health care professionals harbor misperceptions regarding beliefs about death and dying in American Indian tribes, fearing that it is inappropriate to broach the subject. These fears hamper end-of-life discussions, which are crucial for advance care planning and completion of advance directives. This community-based participatory project was conducted on an American Indian reservation in the Northern Plains, where American Indian elders and a nurse researcher developed and implemented a culturally specific advance directive program. At program completion, the 2 elders visited 11 different communities, conducted 270 face-to-face educational sessions, and traveled more than 1000 miles across the reservation. Of those attending the educational sessions, nearly 93% had never heard of a living will, with roughly 7% indicating some knowledge of living wills; 1 person reported having a living will. This community-based, American Indian, elder-led project demonstrates that this population is concerned about its care at end of life and wishes to receive more information. Improving American Indian awareness regarding palliative/end-of life care options and the need for advance directives can help to ensure that their end-of-life wishes will be honored.