'In our culture, we come when you die': Qualitative descriptive analysis of end-of-life perspectives in a reservation-based community.
Katie E Nelson, Kathleen Adams, Michelle Kahn-John and 9 others
PMID 39003639WHAT IT FOUND
Families and public health nurses, not hospitals, carry end-of-life care on this reservation.
Participants trusted nurses and cultural leaders over system providers, citing fear of medication errors and a lack of local hospice facilities as key barriers to home care.
Key findings
01Participants expressed a strong preference for dying at home surrounded by family, viewing this as the ideal end-of-life scenario despite acknowledged caregiving challenges.
02Public health nurses and cultural leaders are trusted more than institutional providers for end-of-life guidance, with families often relying on nurses for basic care due to the absence of local hospice services.
03Caregivers reported significant anxiety about administering medications correctly and a lack of respite support, highlighting a need for culturally tailored education and local facilities.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Findings are specific to the Fort Belknap community and may not generalize to other tribal nations due to distinct cultural and historical contexts. The study relied on self-reported experiences, and social desirability bias may have influenced participants' willingness to share negative views of health care systems. Participants were predominantly female, which may skew the findings toward perspectives of women who often assume primary caregiving roles.
Declared interests
The authors declared no potential conflicts of interest or competing financial relationships.
The easy way to misread this
Do not interpret the preference for home care as evidence that current systems adequately support it. Participants explicitly stated that families feel overwhelmed and lack necessary resources, meaning the preference for home death exists despite, not because of, the current level of support.