Background: Indigenous People of North America (IPNA) are a heterogenous group with a wide range of practices, cultures, faiths, languages, and traditions. Approximately 10 million Americans (or 2.9% of the US population) are of native descent with over 500 tribes recognized by the US government and over 500 indigenous nations in Canada (1). Even finding the most appropriate term to describe indigenous communities is debated and evolving. For consistency, we will utilize IPNA. There are significant variations in beliefs among members of the same tribe, and between different tribes, hence this Fast Fact strives to promote cultural sensitivity, humility, and awareness when supporting all IPNA.
Epidemiology: IPNA are often considered an “invisible minority,” as recognition by established government-reported tracking scales are often ineffective and outdated (2). While life expectancy increased by 15% from 1982-2012 for IPNA (3), the rates of chronic illnesses like cancer, cardiovascular disease, and diabetes mellitus are growing disproportionately compared to the general population (4-6). Cultural differences, social disadvantages, educational inequity, and disproportionate poverty factor into the health care disparities IPNAs experience. These disparities are compounded by healthcare access challenges manifested in difficulty traveling to regional health centers, inconsistent hospice coverage, and inability of some home care/hospice agencies to visit patients who live far away. Furthermore, many IPNA and their families have experienced significant discrimination when they have accessed the US and Canadian health systems. Historical events have catalyzed mistrust among many IPNAs with the health system and generally represent omission of healthcare services (e.g., non-control of trachoma), or unauthorized medical experimentation (e.g., forced sterilization) (7).
Key aspects of serious illness and EOL care for IPNA:
- Core values: Some IPNA believe that illness arises from imbalances between physical, spiritual, and emotional realms and that curing illness involves restoring balance with physical and spiritual healing. For those who practice dual spirituality (both traditional beliefs and some form of Western religious beliefs), this can be a source of comfort or conflict. Without an understanding of these interrelationships from their clinicians, IPNA may feel reluctant to disclose thoughts and experiences about their health. Specifically, many tribes believe that verbalizing specific situations may bring these situations about. This may be misinterpreted as denial or noncompliance and can lead to patient-clinician conflicts (8). Other core values described in the published literature include celebrating life, respect for tradition, hope for a peaceful death, and timely symptom management while surrounded by loved ones (3). Clinicians can foster rapport via explorative language such as: “To help us best care for you, please share how your spiritual beliefs and physical health are related?”
- Advance care planning (ACP) discussions: IPNA are more likely to have multiple life-limiting comorbidities compared with the general population yet are less likely to engage in ACP. This is most often attributed to clinicians’, rather than the patient’s, discomfort. Evidence suggests that IPNA and their families often are amenable to ACP and exploring their end-of-life (EOL) care preferences if clinicians approach these discussions with a spirit of curiosity and avoid assumptions about their values. All patients and families should be asked how they wish to receive information, and who needs to be present. Often this will include extended family and community members. When language barriers are present, patients and families should be asked if they desire an interpreter. Many IPNA also appreciate it when clinicians inquire about tribal affiliations. Culturally tailored ACP materials are available (e.g., Ottawa Personal Decision Guide from Ottawa Health, My Advance Care Plan from the National Indigenous Elder Justice Initiative).
- Prognostic disclosure: Begin by exploring whether the patient wants to discuss prognosis, what aspects they wish to learn more about, and how they would like to receive the information. Knowing whether the patient is comfortable with silence, eye contact, and hand contact can be helpful. In many indigenous cultures, it is constructive to speak in the third person, e.g., “Patients with [pertinent disease] often have a hard time tolerating the treatment and may only live [estimated prognosis].”
- Serious illness conversations: Whenever possible, patients and families should be allowed to control the tempo of these discussions. Family meetings should be scheduled at the convenience of all those that the patient wishes to have present (8). Sufficient time for decision making should be made since some IPNA believe that no decision can or should be made “until the time is right,” often referencing a constellation of physical and spiritual signs.
- Rituals and traditions: Families may want to have access to the body for ceremonial washings, to offer specific prayers, and/or to prepare for special burial practices. These traditions are often time sensitive. Many tribes also believe that the deceased must not be left unattended and may request that a family member stay with them or even accompany them to their chosen place of internment. It is important for clinicians to inquire how they can support their EOL and post-death traditions.
- Legal differences: Clinicians should be aware that reservations are federal entities, much like a sovereign nation within the USA or Canada. Therefore, people who live on the reservation may not be beholden to all a state’s laws.
Myths that may affect the EOL care for IPNA: Commonly described assumptions include a mistaken belief that discussing death and dying is considered taboo and that seriously ill IPNAs will not elect do not resuscitate (DNR) orders nor elect hospice services even when recommended (8).
Clinical pearls: Evidence suggests there are significant barriers to sustainable and effective end of life care for IPNA (9). To navigate beyond these barriers, clinicians should aim to:
- Respect personhood and practice cultural humility when providing serious illness and EOL care to IPNA patients and families.
- Seek out the individual’s preferences for autonomous vs collective decision making by inquiring, “How do you and your family like to make health care decisions?”
- Consider a community/tribal assessment to determine if patients and families understand what serious illness and EOL care resources are available to them.
- Offer interpreters and culturally specific family and spiritual connections (e.g., chaplaincy).
- Utilize culturally sensitive ACP materials.
- Allow patients and other desired parties to control the tempo of serious illness discussions.
- Assure your willingness and commitment to partner for the patient’s best clinical interests.
- Marr L, et al. Confronting myths: the Native American experience in an academic inpatient palliative care consultation program. J Palliat Med. 2012 Jan;15(1):71-6.
- Arenella C, et al. Adaptation, Dissemination, and Evaluation of a Cancer Palliative Care Curriculum for the Indian Health System. J Palliat Care 2010; 26(1):15-21.
- Adamsen C, Schroeder S, LeMire S, Carter P. Education, Income, and Employment and Prevalence of Chronic Disease Among American Indian/Alaska Native Elders. Prev Chronic Dis 2018;15:E37.
- Centers for Disease Control and Prevention. Percent of U.S. adults 55 and over with chronic conditions. 2009. (Accessed September 5, 2021, https://www.cdc.gov/nchs/health_policy/adult_chronic_conditions.htm.)
- Kitzes J, et al. End-of-life issues for American Indians/Alaska Natives: Insights from one Indian Health Service area. J Palliat Med. 2004 Dec;7(6):830-8.
- Gebauer S, et al. Palliative Care for American Indians and Alaska Natives: A review of the literature. J Palliat Med. 2016 Dec;19(12):1331-1340.
- Soltoff A, et al. Utilizing the Consolidated Framework for Implementation Research to explore palliative care program implementation for American Indian and Alaska Natives throughout the United States. J Palliat Med. 2022 Apr;(25(4):643-649.
Conflicts of interest: none to disclose
Version History: first electronically published in June 2023, originally edited by Sean Marks MD
Authors’ Affiliations: 1Mayo Clinic Arizona, Phoenix AZ; 2University of New Mexico Health Sciences Center, Albuquerque NM
Fast Facts and Concepts are edited by Sean Marks MD (Medical College of Wisconsin) and associate editor Drew A Rosielle MD (University of Minnesota Medical School), with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW); the authors of each individual Fast Fact are solely responsible for that Fast Fact’s content. The full set of Fast Facts are available at Palliative Care Network of Wisconsin with contact information, and how to reference Fast Facts.
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