Providing Culturally Centered Palliative Care for Indigenous Peoples of North America
Indigenous People of North America (IPNA) living with serious illness and their families have unmet needs within our health care system. Palliative care teams play a vital role in supporting individuals in IPNA communities and their families by addressing symptoms, honoring cultural identities values and preferences, and enhancing quality of life throughout the trajectory of their serious illness. This resource will describe who IPNA communities are, disparities in their care and strategies for health professionals to utilize to provide a culturally centered approach when caring for this population.
There are numerous distinct tribal nations and cultural identities within this population. For the purposes of this resource, the term Indigenous Peoples of North America (IPNA) will be used. We acknowledge that terminology varies across regions, communities, and data sources, and may include American Indian, Alaska Native, Native American, First Nations, Inuit, Métis, Indigenous, or specific tribal and nation affiliations. Whenever possible, individuals should be identified according to their self-identified community, nation, or tribal affiliation.
“It’s especially important to recognize that there are many layers to providing care for Indigenous communities. As healthcare professionals, (...) we must understand that culture, history, community values, and individual experiences all shape how patients experience healthcare.”
Who Are Indigenous Peoples of North America?
Indigenous Peoples of North America (IPNA) include American Indian, Alaska Native, Native Hawaiian, First Nations, Inuit, Métis, and other Indigenous peoples. Within the United States, American Indian and Alaska Native populations comprise approximately 5.4 million people.
- According to IHS (Indian Health Services) this population is represented by 574 federally recognized tribes along with many additional state-recognized and unrecognized communities across the United States.
- IPNA are diverse, with distinct tribal identities, languages, cultural practices, and relationships to health and healing.
- Many live across both rural and urban settings, with high concentrations in states such as: California, Arizona, Oklahoma, Texas, New York, and New Mexico.
Experience of Serious Illness for IPNA Communities
IPNA populations experience some of the most significant health inequities in the United States, shaped by historical and ongoing structural factors.
- Many IPNA communities experience a disproportionate burden of serious illness, including higher rates diabetes, cardiovascular disease, chronic liver disease, certain cancers, and cancer mortality, contributing to premature mortality and reduced life expectancy as compared to their white counterparts.
- Fragmented care coordination across Indian Health Service, Tribal health systems, Urban Indian Health Programs, and non-tribal providers can disrupt continuity of care and create barriers to accessing benefits and specialty services.
- Colonization, land displacement, and forced assimilation policies have had lasting effects on IPNA communities – contributing to intergenerational trauma and influencing how individuals and families interact with health care institutions today.
- This context also informs strengths. Many IPNA communities emphasize resilience, strong family and community ties, and deep connections to spirituality and land. These values often play a central role in serious illness and end-of-life care.
“It’s startling to see those statistics. When I reflect on my own family, having lost my parents, especially my father at a young age, as well as other loved ones, it strengthens my determination that we have to rise above these disparities.”
Gaps in Care for Indigenous Communities
Many individuals in Indigenous communities experience gaps in care during serious illness that can influence their comfort, trust, and access to high-quality palliative care. The following challenges are commonly encountered and may require additional attention from health professionals:
- Chronic underfunding of Indigenous health systems limits access to services and staffing.
- Workforce shortages, particularly in rural areas, make it difficult to deliver specialty care. There is also a lack of culturally relevant palliative care models and limited research focused on Indigenous populations.
- Access to palliative care remains limited, particularly in rural and tribal areas where specialty services may not be available.
- Health systems serving Indigenous communities are often under-resourced, and patients may need to travel long distances to receive care. Even when services are available, the utilization of end-of-life and advance care planning tends to be lower.
- Poor experiences within the health care system are also shaped by mistrust that stems from historical trauma, including forced relocation, cultural suppression, and unethical medical practices.
- Communication differences, including language preferences and differing cultural norms surrounding illness, decision-making, and silence, may affect mutual understanding and require clinicians to adapt their communication style.
Cultural Considerations in Serious Illness Care
Due to the diversity within this community, there is no single approach that applies to all IPNAs. High-quality care begins with recognizing variation across communities and approaching each patient as an individual.
Cultural practices and preferences vary widely by tribe, but several themes are often important in care, such as:
- Decision-making is often family-centered, although preferences vary widely among individuals and communities.
- Spirituality is often deeply integrated into care, and patients may wish to incorporate ceremonies, prayer, or traditional healers when desired by the patient.
- Communication preferences may differ from typical clinical norms. Some patients may prefer indirect conversations about prognosis or may rely on storytelling rather than direct questioning. In some cultures, direct eye contact may be seen as a sign of disrespect, and silence can be meaningful, rather than a sign of disengagement.
- Connection to home and land is often especially important. Many patients prefer to receive care, and if possible, die in their home community. Supporting these preferences can be a key component of culturally aligned care.
"It’s not enough to be equipped with this knowledge. (Health professionals) need to truly embrace a framework of cultural humility. That means leaving our assumptions at the door and approaching every patient and family with curiosity. We must be willing to listen, learn, and understand what matters most to them. We have to be the learners, asking ourselves, 'How can we best serve and support this person and their family, especially as they navigate serious illness?"
Promising Practices and Opportunities
There are growing opportunities to improve care through approaches that are rooted in community priorities.
- Community-based models that reflect tribal values are emerging in some regions - for example, there are a few tribally operated hospice programs in the (U.S.): Tohono O’odham Hospice (AZ), and Hospice of the Cherokee (OK). These programs are designed and operated by Tribes, with interdisciplinary teams that integrate cultural practices, community preferences, and family involvement into care delivery.
- When desired by patients, integrating traditional healing practices with Western medicine can support more holistic care such as traditional healers, spiritual leaders, cultural advisors, prayer, ceremonies, or other community-based sources of support when desired by the patient and family.
- Ongoing training in cultural competence and humility equips teams to address unconscious biases and appreciate the diverse experiences of their patients.
- Culturally relevant communication tools, including storytelling-based approaches may also improve engagement and understanding.
- e.g. the Alaska Native Tribal Health Consortium (ANTHC)’s Wellness Map which is used to guide advance care planning (ACP) conversations. It was developed to lead an individual through a visual representation of a journey down the river of life.
What Palliative Care Teams Can Do
Individual/Clinician Level
- Inquire and document how the patient prefers to make decisions and who they would like to be involved in those conversations.
- Ask open-ended questions about cultural, spiritual, or traditional practices that may be important to the patient. This approach builds trust through respectful, patient-centered communication. Consider asking questions such as:
- “What cultural or spiritual practices are important to you right now?”
- “Who would you like involved in medical decisions?”
- “What does good care look like to you and your family?”
- Are there traditions, ceremonies, or people that you would like us to know about so we can provide better care for you?
Program Level
- Schedule and facilitate family meetings that include extended family or community members to ensure care is collaborative and inclusive of the people and practices that matter most to the patient.
- Coordinate with social workers, chaplains, or community health workers who have experience working with Indigenous populations, when possible.
- Teams should coordinate care with Tribal health programs or the Indian Health Service to improve continuity, when possible.
- Creating space for cultural and spiritual practices within clinical settings, when safe and feasible to ensure respectful care. This may include asking about the importance of traditional healing practices.
- Program administrators should work with clinical teams to embed questions about cultural and spiritual practices into intake forms and EHR templates
- Quality improvement systems should be informed by community input and grounded in partnership rather than imposed solutions. Improving data collection and using disaggregated data can also help better identify gaps and track progress.
- When possible, allow flexibility in visitation policies to accommodate extended family, spiritual leaders, and cultural practices.
Systems Level
- Foster inclusive workplaces that respect Indigenous identities, traditions, and lived experiences
- Building meaningful partnerships with Tribal health organizations and Urban Indian Health Programs, these relationships can improve coordination, trust, and access to services.
- Invest in training that focuses on cultural humility and the unique experiences of Indigenous populations.
- Ensure operational policies are flexible enough to support family presence, community involvement, and cultural practices.
- Asking if translation services are needed and ensure access to trained interpreters for indigenous languages.
- Expand and optimize access through telehealth and community-based palliative care models to reduce geographic barriers to care.
- Develop long-term partnerships with Tribal communities rather than engaging only when projects or initiatives arise."...That gets at relationship building.
- Supporting the development of an Indigenous health care workforce including CHWs and other interdisciplinary staff.
- Recruit and train Indigenous health professionals who understand local culture, language, and community needs
- Integrate CHWs into care teams to support navigation, education, and continuity of care
- Ensure sustainable funding and career pathways for Indigenous staffing, including certification and advancement opportunities
The most important cultural expert is the patient and family sitting in front of you.
Content Contributors/Acknowledgements:
Jeanna Ford, DNP, APRN, ACNS-BC, ACHPN, FPCN
Clinical Nurse Specialist, University of New Mexico Hospital System
Christopher Piromalli, DO, MPH
Integrated Palliative Medicine Consultant, Southcentral Foundation, Anchorage, AK
Rayna Ross, CHES
Senior Manager, Health Equity, CAPC
Brittany Chambers, MPH, CHES
Senior Director of Health Equity, CAPC