Barriers to end-of-life care in an Oklahoma tribal community

American Indians/Alaska Natives (AIANs) utilize end-of-life (EoL) services at lower rates than other U.S. populations, despite evidence that hospice and palliative care improve quality of life and reduce suffering. This study explores barriers to EoL care within the Chickasaw Nation through semi-structured interviews and focus groups with 27 participants, including health care providers, tribal leaders, and family members of dying persons. Findings reveal pervasive lack of knowledge and misconceptions about hospice, the association of hospice with imminent death, and psychological barriers such as death anxiety and denial. Cultural and generational imperatives that family should provide care and reluctance to allow outsiders—especially non-tribal citizens—into the home further impede service uptake. Systemic gaps, including the absence of tribally operated hospice programs, compound these challenges. Bureaucratic insistence on a 6-month timeline to death, when juxtaposed against the desire for a cure, poses another seemingly intractable barrier. While local non-tribal hospice agencies were generally viewed as high quality and culturally accommodating, participants nonetheless expressed a strong preference for hospice services integrated within the tribal health system and responsive to local culture. These findings underscore the need for culturally responsive education and tribal involvement in EoL care delivery.