Advance care planning (ACP) is documenting the healthcare one would want if one could not speak for oneself. Numerous influences on individual and shared values define appropriate behavior and communication about death and dying among American Indians, Alaska Native, and Native Hawaiian peoples (AI/AN/NHs). In this article the authors report survey results from Title VI directors regarding how AI/AN/NHs learn about ACP. Most participants reported that less than a quarter of older AI/AN/NHs had an advance care plan and that most congregate meal sites would be open to providing ACP information.
American Indian peoples, Alaska Native peoples, Native Hawaiian peoples, advance care planning
Persons indigenous to the lands that are considered the United States of America include American Indian, Alaska Native, and Native Hawaiian peoples (AI/AN/NHs). With the understanding that there is great cultural diversity among AI/AN/NHs, this diversity extends to beliefs and behaviors surrounding death and dying. There is a complex historical context that influences individual and shared values that define appropriate behavior and communication about death and dying among AI/AN/NHs. Also, there are a broad range of beliefs influencing individual decision making and shared community values that define appropriate communication with respect to end-of-life decision making (Baik, Cho, & Masterson, 2019). Death and dying are as individual to the family as they are to the tribe or community, and this article would not be complete without this recognition.
Advance care planning (ACP) is documenting the healthcare one would want if one could not speak for oneself. ACP can include: picking someone to make healthcare decisions if one cannot; thinking about what kind of healthcare one would want if one is unlikely to get better; informing family, friends and doctors of one’s wishes; and writing wishes down in a legal form.
For people who are providing ACP services, being sensitive to this diversity of beliefs is important for end-of-life decision making. Each person’s attitudes and perspectives regarding healing, death, and their level of comfort with the formal healthcare system are dependent upon past experiences and the degree to which they rely upon traditional Indigenous practices and medicine.
Because no two people have the same beliefs around end-of-life care and decision making, everyone should be given an opportunity to express their healthcare wishes in the event they cannot speak for themselves. ACP empowers people by allowing them to make healthcare decisions prior to a possible circumstance where they would be unable to, thereby providing a sense of control, reducing the likelihood of receiving futile treatment, and preventing unnecessary prolongation of the dying process.
Those who have an advance care plan are more likely to have goal-concordant care, report decreased anxiety around end-of-life decision making, and their primary caregivers report reduced distress (Detering et al., 2010). Yet, ACP rates in the AI/AN/NH population are remarkably low, including advance directives, do not resuscitate orders, and palliative care (Isaacson, 2017; Kwak et al., 2019), as well as hospice care use (Braun, Onaka, & Horiuchi, 2001; National Hospice and Palliative Care Organization, 2020).
‘Those who have an advance care plan are more likely to have goal-concordant care.’
The Patient and Self-Determination Act (PDSA), passed as part of the Omnibus Budget Reconciliation Act (1990), requires that hospitals and other healthcare organizations participating in Medicare and Medicaid programs inform their patients of their rights under existing state law to accept or refuse medical or surgical treatment and to formulate advance directives. The goal of this legislation is to increase patient participation in end-of-life decision making. However, a medical chart review of a New Mexico Indian Health Service facility found that information about advance directives as required by the PSDA appeared in only 20% of the charts (Kitzes & Berger, 2004).
According to the Indian Health Service, if there is a tribal law that governs advance directives, it will apply for those tribal members living on that Tribe’s reservation. An advance directive executed in a state or tribal jurisdiction other than that in which the Indian Health Service hospital is located may be honored (Indian Health Service, n.d.). Regarding the PSDA and AI/AN/NHs, the goal should be to understand the patient’s wishes without allowing the formal procedures to impair the process.
ACP has been a billable service for Medicare enrollees since 2016. Current payment models require providers to spend a minimum of 16 minutes with patients to bill for services, and Medicare enrollees are required to pay a co-pay unless it is accompanied with the annual Medicare Wellness visit (Ladin et al., 2022).
Potential for Increasing Uptake of ACP Options Among AI/AN/NHs
Our experience with COVID-19 underscores the critical importance of ACP among people with underlying chronic diseases (Curtis, Kross, & Stapleton, 2020), which plague AI/AN/NHs at higher rates (Kaiser Family Foundation, 2020). Two recent studies, one with Ojibwe Elders (Dennis & Washington, 2018) and another with Blackfeet Elders (Colclough & Brown, 2019) concluded that participants were open to thinking about, discussing, and documenting their end-of-life care.
Other research found that AI/AN patients who had services from trained healthcare providers in culturally sensitive techniques were as likely as White patients to discuss code status, choose hospice care, and choose a do-not-resuscitate order (Marr et al., 2012). Surprisingly, however, there have been relatively limited published attempts to tailor ACP for AI/AN/NHs (Dennis & Washington, 2018; Isaacson, 2018; Isaacson & Lynch, 2018; Lillie et al., 2020).
A systematic literature review sought to determine the completion rate of any type of advance directive in the United States regardless of race or ethnicity. The study reviewed 150 studies published between 2011 and 2016 and determined that 37% of study participants had completed an advance directive, including 29% with living wills (Yadav et al., 2017).
Overall, ACP rates are disproportionately low among AI/AN/NHs. For instance, a study with 270 AI/ANs found that none had heard of palliative care and 93% had never heard of a living will (Isaacson, 2017). When compared to Whites, AI/ANs were half as likely to have a living will and/or a healthcare power of attorney (Kwak et al., 2019).
A statewide study in Oregon found that 64% of AI/ANs had an advance directive compared to 82% of White and 40% of Black participants (Tilden et al., 2004). An analysis of the Behavioral Risk Factor Surveillance Survey found that compared to Native Hawaiians, Whites were more likely to have a living will (36% vs. 22%) and a healthcare power of attorney (30% vs. 20%) (Braun, Onaka, & Horiuchi, 2001).
The lower rate of ACP among AI/AN/NHs is not a reflection of unwillingness to engage in conversations about death (Dennis & Washington, 2018; Isaacson, 2017). Rather, the lack of access to such opportunities and healthcare professionals’ stereotypes that AI/AN/NHs do not want to engage in end-of-life conversations present formidable ACP barriers (Anderson et al., in press).
‘ACP approaches for AI/AN/NHs should be developed with guidance and input from the intended community.’
Further, typical ACP models may be incompatible with Indigenous peoples because they are conventionally delivered in clinical settings by clinicians, of whom AI/AN/NHs often have had negative experiences (Colclough & Brown, 2019 Isaacson & Lynch, 2018; Simonds et al., 2014). ACP approaches for AI/AN/NHs should be developed with guidance and input from the intended community (Isaacson & Lynch, 2018) and incorporate culturally relevant values (Lillie et al., 2020; Wong et al., 2019).
For one tribe, the Eastern Band of Cherokee Indians, their cultural values stress intentional engagement and human agency in the experience of death. A foundational part of this tribe’s worldview is a state of harmony, balance, and order. Thus, disease and death are perceived as foreign, undesirable yet unavoidable elements of the world. Consequently, comforting someone during the end of life involves the full life world of the individual. Among many tribal members, end-of-life beliefs and practices reflect a unique combination of Christian and Indigenous traditional practices. A respectful approach to Indigenous traditional concepts regarding funerary beliefs, body preparation, and protection of loved ones along their journey into the afterlife is critical.
During the fall of 2021, we surveyed Title VI Directors to understand how AI/AN/NHs are learning about ACP. Our goal was to understand the extent to which older Indigenous adults in AI/AN/NH communities have access to ACP information and resources. Title VI of the Older Americans Act authorizes funds for supportive and nutrition services to AI/AN/NH Elders. Funds are awarded directly by the Administration on Community Living to Indian tribal organizations, Native Alaskan organizations, and nonprofit groups representing Native Hawaiians. To be eligible for funding, a tribal organization must represent at least 50 AI/AN/NHs ages 60 and older.
The program provides services such as transportation, home-delivered and congregate nutrition services, information and referral, and a wide range of homecare services. Title VI also provides funding for AI/AN/NH Elder caregiver training, respite, information, outreach, counseling, support groups, and support services to AI/AN/NH Elders. Title VI programs serve as a key resource for non-medical long-term care services and many tribes use this funding for some of the most widely available services (Goins, Bogart, & Roubideaux, 2010).
The Survey and Results
We recruited survey participants through email and telephone calls from a list of Title VI directors published online by the Office for AI/AN/NH programs. In our request for participation, we asked the directors that if they felt as though someone else in their program would be better at answering questions about ACP, to forward our survey participation request to them. Participants were voluntarily entered into a $100 gift card drawing upon completion of the survey. Ethics approval was obtained from the university board prior to the date of recruitment. The online listing for Title VI directors contained 247 individuals with email addresses—10 of the email addresses did not work, and 28 people refused to participate. We were also unable to contact 48 potential participants due to various reasons. Ultimately, we had a total of 70 participants.
We collected data via an anonymous online survey. The initial participation request was sent out in an email on October 6, 2021. Follow-up emails were sent on October 11, 2021, and November 1, 2021. Follow-up telephone calls were conducted for all 247 potential participants between October 18 and 29, 2021, and followed a script requesting survey participation. We spoke directly with 73 of the potential participants on the telephone, and left 110 voicemails offering availability for questions or concerns regarding the survey. For our purposes, we set up a Google Voice number so that potential participants could reach us directly and quickly and set up the survey instrument so that any replies to the survey request itself would go directly to researchers. At the conclusion of the study, we had additionally corresponded with eight participants via email and had returned five voicemails.
Most of our participants were Title VI Directors (84%), followed by other Title VI program staff (11%), with two tribal administrators/managers (3%), and one tribal leader (1%). We asked participants what percentage of the senior center/congregate meal site attendees they believed had an advance care plan with the following response options: 0%–24%, 25%–49%, 50%–74%, and more than 75%.
As seen in Figure 1, 73% of respondents reported that 0%–24% of their senior center/congregate meal site attendees had an advance care plan, 18% reported that 25%–49% did, 7% reported that 50%–74% did, and a single respondent reported that more than 75% did. Most participants (74%) indicated that senior center/congregate meal site participants would be neutral to very willing to discuss ACP.
Fifty-eight percent of participants indicated that their senior center/congregate meal site offered information to their attendees about ACP in the past five years. The remaining participants indicated that the senior center had not provided information in the past five years, which was primarily attributed to a lack of available information and resources.
Of the 40 individuals who indicated that they had offered information, more than half reported delivering the information via guest speakers/presentations, brochures and program materials, and referrals to people and/or agencies for assistance. Information was commonly provided by onsite staff, by a community health representative, or by a social worker affiliated with either the tribe or the hospital.
The most common barriers to ACP adoption were lack of understanding, procrastination, and unwillingness to discuss the topic.
Most of the participants (69%) were unaware of any educational opportunities provided by other tribally based programs. Participants reported that community members were most often introduced to ACP in medical settings by healthcare providers, social workers, and hospice and palliative care providers, followed by the senior center/congregate meal site and home health agencies. Most participants (80%) reported that tribal members had access to ACP information and resources from tribal and non-tribal services.
Figure 2 presents the top 10 most prevalent barriers for tribal members to engage in ACP. We asked participants to check from a listing of 14 potential barriers to engaging in ACP. The most common barriers selected were lack of understanding, procrastination, and unwillingness to discuss the topic. We also asked participants what they thought would help more people in their tribal communities to develop advance care plans. In response, most participants cited having more open discussions and more educational and training opportunities for staff and community members.
Educational and training ideas included events to educate and train staff, community-based events to educate and assist with ACP, developing educational materials for distribution, and advertising. Participants also identified cost, transportation, and language as potential barriers, and additional considerations included issues of privacy and confidentiality, representation, the longevity of interventions, monolithic approaches, conflicting cultural norms, and COVID-19 related concerns.
Cultural values as well as beliefs and practices with respect to end-of-life and death vary among AI/AN/NHs. A one-size-fits-all approach with ACP does not consider the unique and diverse social and cultural factors surrounding death and dying among AI/AN/NHs. In some Indigenous cultural groups, dying in the home is highly undesirable because it is believed that the spirit of the body lingers at the place of death, creating trouble for the spirit of the deceased and the family alike. For others, a peaceful death is achievable only when the person can die at home, attended to by close family members, and the body is cleansed in ritual following death (Hughes, 1982).
ACP allows people the opportunity to express their unique values and preferences related to end-of-life care. This is an urgent need considering the COVID-19 epidemic, as American Indians had the highest ICU and death rate related to COVID-19 compared to any other racial or ethnic group (Acosta et al., 2021). COVID-19 has revealed a greater willingness for people to complete an advance directive, with a recent study finding a 4.9-fold increase in online advance directive completion as well as more comprehensive completion since the onset of the COVID-19 pandemic in the absence of contemporaneous efforts to increase uptake of the ACP platform (Auriemma et al., 2020).
Previous research has identified barriers within the healthcare system that contribute to lower ACP rates with AI/AN/NHs. AI/AN/NHs have experienced systematic racism, bias, and oppression within the healthcare system (Jones et al., 2021), often negatively affecting patient-provider trust. A broad, informal communication-focused approach to ACP is thought to be preferable to formal advance directive documentation to meet the needs of culturally diverse populations (McDermott & Selman, 2018).
We described how AI/AN/NHs are introduced to ACP from the perspective of Title IV directors and other relevant tribal employees. Most of the respondents believed that less than a quarter of AI/AN/NHs had an advance care plan and that most congregate meal sites would be open to providing information on ACP. This confirms other research findings that AI/AN/NHs are willing to engage in ACP conversation if it is approached with cultural sensitivity (Dennis & Washington, 2018; Marr et al., 2012).
We also found that the participants believed the most common barriers to ACP were lack of understanding, procrastination, and unwillingness to discuss the topic. The perception about older AI/AN/NHs being unwilling to discuss end-of-life care is concerning because research has indicated that this is not the case. Future interventional work should take this into consideration. ACP conversations frequently occur within the healthcare system during a medical crisis or at the onset of serious illness, which can create fear and anxiety because of its association with terminal illness. Title VI directors are in a unique position to bolster ACP efforts in AI/AN/NHs communities because community-based ACP conversations allow individuals to make these decisions in their own community, with family and friends, where traditional practices are the norm. However, to effectively do so, we must respond to the findings illustrated in this study that resources need to be developed, and Title IV staff needs to be trained in ACP.
Given the high mortality rates, chronic disease risks and medical technology advances, the need to make decisions about end-of-life care for AI/AN/NHs is imperative. Congregate meal sites covered by Title IV are a trustworthy asset in AI/AN/NH communities. ACP at congregate meal sites may provide an efficient and effective solution to many of the noted barriers to ACP for AI/AN/NHs, including cost and transportation concerns, however, efforts to create a private environment would need to be considered. Providing safe and trusting spaces to have these important conversations is vital to effective end-of-life care for AI/AN/NHs.
Acknowledgements: Funded, in part, by the National Institutes of Health (R21NR019910).
R. Turner Goins, PhD, is the Ambassador Jeanette Hyde Distinguished Professor in the College of Health and Human Sciences at Western Carolina University in Cullowhee, NC. Elizabeth Anderson, MSW, DSW, is an assistant professor in the College of Health and Human Sciences at Western Carolina University, and an associate research scientist at the Pacific Institute of Research and Evaluation in Chapel Hill, NC. Emily Haozous, PhD, RN, FAAN, is a research scientist at the Pacific Institute of Research and Evaluation. Caitrin Doyle is studying for her Master’s in Social Work at Western Carolina University and did this project as an in-depth study.
Acosta, A. M., Garg, S., Pham, H., Whitaker, M., Anglin, O., O’Halloran, A., ... & Havers, F. P. (2021). Racial and ethnic disparities in rates of COVID-19–associated hospitalization, intensive care unit admission, and in-hospital death in the United States from March 2020 to February 2021. JAMA network open, 4(10), e2130479-e2130479.
Anderson, E., Twiggs, C., Goins, R. T., Astleford, N., & Winchester, B. (in press). Nephrology and palliative care providers’ beliefs in engaging American Indian patients in palliative care conversations. Journal of Palliative Medicine. DOI: 10.1089/jpm.2021.0612
Auriemma, C. L., et al. (2020). Completion of advance directives and documented care preferences during the Coronavirus Disease 2019 (COVID-19) pandemic. Journal of the American Medical Association Network Open, 3(7), e2015762. https://doi.org/ 10.1001/jamanetworkopen.2020.15762
Baik, D., Cho, H., & Masterson, R. M. (2019). Examining interventions designed to support shared decision making and subsequent patient outcomes in palliative care: A systematic review of the literature. American Journal of Hospice & Palliative Medicine, 36(1), 76–88. https://doi.org/ 10.1177/1049909118783688
Braun, K. L., Onaka, A., & Horiuchi, B. (2001). Advance directive completion rates and end-of-life preferences in Hawai‘i. Journal of the American Geriatrics Society, 49, 1708–13. https://doi.org/10.1046/j.1532-5415.2001.49284.x
Colclough, Y. Y., & Brown, G. M. (2019). Moving toward openness: Blackfeet Indians’ perception changes regarding talking about end of life. American Journal of Hospice and Palliative Care, 36(4), 282–9. https://doi.org/10.1177/1049909118818255
Curtis, J. R., Kross, E. K., & Stapleton, R. D. (2020). The importance of addressing advance care planning and decisions about do-not-resuscitate orders during novel coronavirus 2019 (COVID-19) Journal of the American Medical Association, 323(18), 1771–2. https://doi.org/10.1001/jama.2020.4894
Dennis, M. K., & Washington, K. T. (2018). “Just let me go”: End-of-life planning among Ojibwe elders. Gerontologist, 58, 300–7. https://doi.org/10.1093/geront/gnw151
Detering, K. M., Morley, S. K., Haozous, E. A., Finlay, E., Camarata, C., Fahy, B., FitzGerald, E., Harlow, K., & Marr, L. (2010). The impact of advance care planning on end-of-life in elderly patients: Randomised controlled trial. British Medical Journal, 340, c1345. https://doi.org/10.1136/bmj.c1345
Goins, R. T., Bogart, A., & Roubideaux, Y. (2010). Service provider perceptions of long-term care access in American Indian and Alaska Native communities. Journal of Health Care for the Poor and Underserved, 21(4), 1340–53. https://doi.org/10.1353/hpu.2010.0934
Hughes, L. H. (1982). Cherokee death customs (Masters thesis). University of Tennessee, Knoxville, TN.
Indian Health Service. (n.d.). Chapter 26 - Patient Self-Determination and Advance Directives. Indian Health Manual. Retrieved June 30, 2022, from www.ihs.gov/ihm/pc/part-3/p3c26/.
Isaacson, M. J. (2017). Wakanki Ewastepikte: An advance directive education project with American Indian elders. Journal of Hospice and Palliative Nursing, 19(6), 580–7. https://doi.org/ 10.1097/NJH.0000000000000392www.ihs.gov/ihm/pc/part-3/p3c26/
Isaacson, M. J. (2018). Addressing palliative and end-of-life care needs with Native American elders. International Journal of Palliative Nursing, 24(4), 160–8. https://doi.org/10.12968/ijpn.2018.24.4.160
Isaacson, M. J., & Lynch, A. R. (2018). Culturally relevant palliative and end-of-life care for U.S. Indigenous populations: An integrative review. Journal of Transcultural Nursing, 29(2), 180–91. https://doi.org/10.1177/1043659617720980
Jones, T., Luth, E. A., Lin, S. Y., & Brody, A. A. (2021). Advance care planning, palliative care, and end-of-life care interventions for racial and ethnic underrepresented groups: A systematic review. Journal of Pain and Symptom Management, 62(3), e248–e260. https://doi.org/10.1016/j.jpainsymman.2021.04.025
Kaiser Family Foundation. (2020, May). COVID-19 Presents Significant Risks for American Indian and Alaska Native People. Retrieved May 20, 2020, from www.kff.org/coronavirus-covid-19/issue-brief/covid-19-presents-significant-risks-for-american-indian-and-alaska-native-people/.
Kitzes, J., & Berger, L. (2004). End-of-life issues for American Indians/Alaska Natives: Insights from one Indian Health Service Area. Journal of Palliative Medicine, 7(6), 830–8. https://doi.org/10.1089/jpm.2004.7.830
Kwak, J., Cho, Y. I., Lee, Y. S., Noh, H., & Roh, S. (2019). Differences in advance care planning between American Indian and white older adults. Research in Gerontological Nursing, 12(1), 34–43. https://doi.org/10.3928/19404921-20181212-02
Ladin, K., Bronzi, O., Gazarian, P., Perugini, J., Porteny, T., Reich, A., Rodgers, P., Perez, S., & Weissman, J. (2022). Understanding the use of Medicare procedure codes for advance care planning: A national qualitative study. Health Affairs, 41(1), 112–9. https://doi.org/10.1377/hlthaff.2021.00848
Lillie, K. M., Dirks, L. G., Curtis, J. R., Candrian, C., Kutner, J. S., & Shaw, J. L. (2020). Culturally adapting an advance care planning communication intervention with American Indian and Alaska Native people in primary care. Journal of Transcultural Nursing, 31(2), 178–87. https://doi.org/10.1177/1043659619859055
Marr, L., Neale, D., Wolfe, V., & Kitzes, J. (2012). Confronting myths: The Native American experience in an academic inpatient palliative care consultation program. Journal of Palliative Medicine, 15(1), 71–6. https://doi.org/10.1089/jpm.2011.0197
McDermott, E., & Selman, L. E. (2018). Cultural factors influencing advance care planning in progressive, incurable disease: A systematic review with narrative synthesis. Journal of Pain and Symptom Management, 56(4), 613–36. https://doi.org/10.1016/j.jpainsymman.2018.07.006
National Hospice and Palliative Care Organization. (2020). NHPCO Facts and Figures. 2020 Edition. Retrieved May 5, 2022, from www.nhpco.org/hospice-facts-figures/.
Omnibus Budget Reconciliation Act of 1990. Pub. L. No. 101–508, 104 Stat. 143 (1990). www.ssa.gov/OP_Home/comp2/F101-508.html
Simonds, V. W., Goins, R., T., Krantz, E. M., & Garroutte, E. M. (2014). Cultural identity and patient trust among older American Indians. Journal of General Internal Medicine, 29(3), 500–6. https://doi.org/10.1007/s11606-013-2578-y
Tilden, V. P., Tolle, S. W., Drach, L. L., & Perrin, N. A. (2004). Out-of-hospital death: Advance care planning, decedent symptoms, and caregiver burden. Journal of the American Geriatrics Society, 52, 532–9. https://doi.org/10.1111/j.1532-5415.2004.52158.x
Wong, S., Kamaka, M., Carpenter, D-A. L., & Seamon, E. M. (2019). A review of the literature on Native Hawaiian end-of-life care: Implications for research and practice. Hawai’I Journal of Health & Social Welfare, 78(12), Supplement 3, 41–4.
Yadav, K. N., Gabler, N. B., Cooney, E., Kent, S., Kim, J., Herbst, N., … Courtright, K. R. (2017). Approximately One In Three US Adults Completes Any Type of Advance Directive For End‐Of‐Life Care. Health Affairs, 36(7), 1244–51. httpsW://doi.org/10.1377/hlthaff.2017.0175