“Are They Just Experimenting With All of Us?” Cultural Considerations for Clinicians Caring for Seriously Ill Great Plains American Indians

Abstract

Context:

Serious illnesses like cancer disproportionately affect American Indians and Alaska Native (AI/AN) Peoples. AI/AN patients deserve culturally responsive healthcare at all times, and especially when journeying through serious illness.

Objectives:

To learn about specific clinician-related factors that AI/AN cancer survivors, caregivers, Tribal leaders, and traditional healers want from their clinicians while experiencing cancer.

Methods:

We utilized qualitative interviews and Indigenous talking circles to explore perspectives on what type of clinician education, communication approaches, and clinical resources are desired so that clinicians may provide culturally responsive care to AI/AN peoples experiencing cancer. Analysis was completed via a team of Native and non-Native researchers analyzing narrative data from AI/AN cancer survivors, caregivers, Tribal leaders, and traditional healers.

Results:

Interviews and talking circle qualitative analysis revealed 3 major themes related to clinician needs: cultural considerations, psychosocial support, and trust.

Conclusion:

Any clinician caring for AI/AN peoples with serious illness such as cancer needs to understand clinician-related factors that AI/ANs say impact their care when experiencing serious illness. It is important for clinicians to engage in cultural education and work to improve systemic deficiencies such as a lack of psychosocial support. An overarching theme was also the need for clinicians to seek to develop trustworthiness and earn trust when caring for AI/AN patients experiencing serious illness.

Introduction

American Indians and Alaska Native (AI/AN) Peoples are disproportionately affected by serious illness, such as cancer. Moreover, AI/ANs living in the Great Plains region of the United States (US), have significantly higher rates of cancer, heart disease, kidney, and liver disease than whites.^1–4 While there are many reasons for these inferior outcomes including inadequate health insurance, poverty, and geographic challenges, lack of culturally responsive healthcare, systemic racism embedded within healthcare systems, and colonization certainly play a large role.^5–8 These factors also elucidate why AI/AN patients often have a lack of trust in clinicians.^6,9

The concept of health system trust must be contextualized via historic and ongoing failings of the federal health system. It is crucial to acknowledge the several major, recent failings of the federal health system that these specific AI/AN communities experience.^10–12 Additionally, historical and ongoing trauma, including the reverberating effects of colonization, and the systemic racism embedded in our health systems all contribute to poor health outcomes experienced by AI/ANs,^9,13,14 the incredible and disproportionate serious illness burden, and an understandable lack of trust in Western medicine.^14,15 In fact, aspects of the Western healthcare model have even been described as “at best… ineffective [for] Native American clients, and, at worst, they are a vehicle for Western colonization.¹⁶”

Specifically in this study’s region of the Great Plains, colonization has resulted in compounding losses of land, language, food, and traditional ways of being.^4,9,13,17 The loss of these traditional practices, rituals, and ceremonies, due to historical and ongoing trauma and racism, have resulted in the erosion of traditional spirituality and identity.^4,17,18 These compounding losses may be especially painful near end-of-life, where being able to trust one’s clinicians at such a vulnerable time is particularly necessary, and not having access to or knowledge of traditional practices may lead to additional stress, trauma, and isolation. Additionally, if clinicians lack an awareness of AI/AN patients’ traditional ways, beliefs about health and well-being, and the historical and ongoing traumas experienced, it may lead to further erosion of trust at end-of-life.

It is important for all clinicians (doctors, nurses, social workers, and other health care workers) to have a basic framework to understand how many AI/ANs’ conceptualize health and well-being as deeply rooted in spirituality and a collective experience with their relatives, friends, and community, and also existing between the Creator and all beings.^16,19,20 It is also crucial that clinicians recognize the link between culture and health outcomes, as for many AI/AN Peoples, culture is a social determinant of physical, mental, emotional, spiritual, and community health.²¹

The purpose of this manuscript is to share the perspectives of AI/AN cancer survivors, caregivers, traditional healers, and Tribal leaders within 3 Tribal communities in the Great Plains region on what is needed from their clinicians when experiencing serious illness. As part of a larger study focused on development of culturally responsive palliative care within these Tribal communities, this manuscript will focus on these 3 Tribal communities’ perspectives on what skills, infrastructure, and mindset that clinicians need when caring for AI/ANs experiencing serious illness.

While the findings are specific to 3 Great Plains Tribal communities, we hope our process of community-based participatory research (CBPR) within this minoritized population will be relevant for clinicians caring for other minoritized populations. While reports of our other findings^22,23 focus on the identified needs of patients and their families, we also felt it was important to identify themes representing elements of care that AI/AN patients need from their clinicians.

We also believe that hearing from one specific minoritized community about lack of trustworthiness, lack of psychosocial support, and the need for increased culturally responsive care will be a call to action for clinicians beyond just those caring for AI/AN patients. As clinicians, it is critical that we begin to recognize the systemic racism and inherent biases embedded within our healthcare systems. It is increasingly important to engage in culturally humble care and dismantle racism within our systems for all patients, particularly AI/ANs who experience ongoing healthcare discrimination and egregiously poorer health outcomes.

Methods

This first phase of a larger study was conducted via CBPR methodologies.^24,25 As community partnership and engagement is central to CBPR methodologies, our team included a community advisory board (CAB) consisting of enrolled Tribal members from each of 3 reservations. CAB members gave feedback and guidance through quarterly CAB meetings on methodological aspects such as interview guides, recruitment, and selection of interview participants. Study approval was granted by Partners Human Research as the single Institutional Review Board (IRB) for all academic and clinical partners. Each Tribal Health Board/IRB as well as Great Plains Region Indian Health Service granted additional approvals.

Participants

We recruited participants from each of 3 reservation communities from November 2020 through May 2021. Eligibility criteria for the 4 groups of participants included: being at least 21 years of age, self-identified as AI, and at least part-time residence in one of the reservations. Specific eligibility criteria for each group were: for cancer survivors—cancer diagnosis other than skin cancer; for caregivers—any individual a cancer survivor consistently turns to for physical, emotional, mental, or spiritual support and who had cared for someone in the past 5 years; and for Tribal leaders and traditional healers—individuals who were recognized as a Tribal leader or traditional healer by members of our CABs. The inability to provide informed consent was the exclusion criteria for any participant (though no participants were excluded due to these criteria).

Recruitment

We utilized purposive and snowball sampling techniques to identify study participants. Our team also disseminated flyers on social media (eg, Facebook) and pertinent websites (eg, Tribal, cancer survivor group meetings). CAB members provided names/contact information of potential participants they thought would be interested. We also used snowball sampling, where study participants contacted other individuals they thought might be interested. Once enrolled, participants engaged in individual interviews (for Tribal leaders/traditional healers) or talking circles (for cancer survivors/caregivers) as these interview styles were deemed most culturally appropriate for each group.

Talking Circles/Interviews

We utilized talking circles, an Indigenous methodology²⁶ that allows for trust- and relationship-building. In this methodology no single individual is in a position of power, with the goal of all participants being able to speak openly and feel their perspectives are accepted, and a talking stick being passed to ensure each participant has a chance to share.^26–28 Cancer survivors attended 2 talking circles (each lasting roughly 2 h). The first was utilized as a space for them to share their cancer journey experience, as storytelling is an important Tribal value, per our CABs. The second cancer survivor talking circle involved mainly questions asked via the interview guide. Caregivers attended one talking circle which utilized the same interview guide as the second talking circle for cancer survivors. We conducted talking circles until thematic saturation was reached and also until we ensured roughly equal representation from each Tribal community.

While talking circles were conducted with cancer patients and caregivers, our CAB recommended interviews with individual Tribal leaders and traditional healers as the most culturally-appropriate qualitative methodology. We conducted 30–60 min interviews with Tribal leaders and traditional healers. Table 1 shows sample clinician-focused questions from the guides for each of the talking circles and interviews. Additional guide questions are highlighted in separate manuscripts.^22,23

Table 1.

Talking Circle and Interview Guides: Sample Clinician-Focused Questions.

Cancer survivor talking circle

Tell us more about the support you have received from your medical team. This could include doctors, nurses, social workers or other health workers.

We recognize that traditional medicine is important to tribal communities. Is this something that is important to you? If so, how do you include traditional medicine into your care?

Understanding that palliative care is designed to help people live well with cancer, I am wondering what does living well with cancer mean to you? What does living well with cancer look like? What does it feel like?  • Prompt: Tell us more about how best to meet your emotional needs  • Prompt: Tell us more about how best to meet your social needs  • Prompt: Tell us more about how best to meet your physical needs  • Prompt: Tell us more about how best to meet your spiritual needs

Caregiver talking circle  Understanding that palliative care is designed to help people live well with illnesses like cancer, I am wondering, what does living well with cancer mean to you? What does living well with cancer look like? What does it feel like?   • Prompt: Tell us more about how best to meet you and your loved one’s emotional needs   • Prompt: Tell us more about how best to meet you and your loved one’s social needs   • Prompt: Tell us more about how best to meet you and your loved one’s physical needs   • Prompt: Tell us more about how best to meet you and your loved one’s spiritual needs  Tell us more about the support you and your loved one have received from your medical team. This could include doctors, nurses, social workers or other health workers  We recognize that traditional medicine is important to tribal communities. Is this something that is important for your loved one? If so, how do you include traditional medicine into your loved one’s care?

Traditional healer interview  Traditional medicine and practices are often left out of plans of care (or care plans). We wonder how do we best include traditional medicine/practices into a palliative care program that is respectful and honors the sacredness of these practices?  What are your suggestions for helping persons with cancer participate in western medicine and traditional medicine?

Tribal leader interview  Are there any cultural disconnects you have noticed between healthcare providers and patients with cancer or other serious illness?  How can healthcare providers be more culturally sensitive when treating patients with cancer or serious illness?  What is the single most important service we can provide in order to help patients with cancer or other serious illnesses live well in [insert reservation name here]?

Data Collection

Tribal Health Boards recommended switching from in-person talking circles/interviews on the reservations to using Zoom videoconferencing during the COVID pandemic. Three study team members (TD, GJ, MJI) conducted each talking circle and interview. Each were recorded and transcribed verbatim. Per recommendations of the CAB, in order to be culturally responsive, traditional healer interviews were not recorded. Instead, each study team member took notes by hand and later synthesized them into a narrative document.

Data Analysis

Preliminary content analysis to code, categorize, and organize narrative data²⁹ was conducted by our data analysis team consisting of both Native and non-Native study team members. Our team ensured that each narrative was reviewed by both a Native and non-Native member of the team.

Each team member individually read and coded their assigned interviews via NVivo 12 Pro.³⁰ The initial team meeting consisted of discussion of initial codes and categories, and through consensus, drafted a preliminary codebook team members could use for individual coding of remaining transcripts. The team met a second time to discuss categories, codes, and subcodes until consensus was reached. Member-checking was completed by having 3 team members present the themes to the CABs for their feedback.

Results

Thirty-six AI/ANs from 3 Great Plains Tribal reservations shared their perspectives and stories about what is needed to live well with cancer. As described in previous manuscripts,^22,23 all 3 reservations had nearly equal representation across participant groups, though the majority of participants were female. Thematic analysis of talking circles and interviews (Table 1) revealed 3 major themes related to clinicians caring for AI/AN patients with serious illness: cultural considerations, psycho-social support, and trust.

Themes

Cultural Considerations for Clinicians

Cancer survivors, family caregivers, Tribal leaders, and traditional healers all stressed the critical need for cultural training for clinicians caring for AI/AN patients and families. They shared grave concerns with the lack of knowledge and sensitivity demonstrated by clinicians, healthcare facilities, and occasionally among cancer care centers. Participants identified the need for clinicians to build trusting relationships with patients and families. The majority felt cultural education would be a helpful initial step toward improving clinicians’ cultural awareness. “…if they [clinicians] are going to come here to provide services for people, they should receive an orientation of our culture.”

Several participants shared how crucial compassionate and empathetic communication is when caring for AI/AN patients. Cancer survivors described receiving the news about their cancer diagnosis over the phone or being told without a loved one present. “…my doctor called me on the phone and said oh, and by the way you’ve got cancer.” Clinicians should also not assume that silence on the part of AI/AN patients means aloofness, or that they have no questions. Participants reiterated that clinicians need to be aware that AI/AN patients and families may have questions but be fearful to ask, may not know what to ask, or out of respect for their clinicians, may expect that their clinicians will tell them what they need to know.

Another factor to be considered when communicating with AI/AN patients and families is understanding the concept of “wokunze,” which loosely translated means if you speak it [the illness], it will happen. When clinicians wish to conduct advance care planning conversations or share prognosis with AI/AN patients and families, they must be attentive to specific cultural nuances to avoid wokunze. This may include praying before the conversation, asking the patient and family permission before sharing, or speaking in third person.

The importance of family is another crucial cultural consideration. “…Include the whole family when you are talking to the patient on what’s going on.” Clinicians need to recognize that “family may not always be husband, daughter, grandma, grandpa. It might be a whole bunch of friends or neighbors…it’s not always the same.” Families may wish to provide traditional healing practices, such as smudging. “…if a family member is visiting them and they want to smudge them…just understanding that that’s part of our culture.” These practices should be encouraged and offered to patients and families, demonstrating cultural knowledge.

Psychosocial Support

Another major theme identified was the need for psychosocial support. In part, the psychosocial need arose from direct effects of the cancer on patients and families (eg, the toll it took on their mental and emotional health, the grieving process they went through when first diagnosed), and from the loneliness and isolation from their communities’ that patients often felt. One possible solution patients, caregivers, and Tribal leaders all mentioned were support groups:

“Traditionally it was our tiospaye system, right? It was our tiwahe, our family that helped us and took care of us. And, that’s something that’s kind of not happening anymore, and so it’s repairing that system too… We don’t want to feel like we’re alone in this, and I think if there was even like a cancer support group, that would be really helpful too. I don’t know if there’s really anyone here on the rez for them or anything.”

Others mentioned they wished there were clinicians from their community who could have come into the home and provided psychosocial support:

“…if we could find somebody who’s willing to go into the homes with palliative care patients and help them to set up a schedule and then just be somebody that they can vent to because I know it’s really frustrating taking care of a terminally ill family member.

Trust

Among all narratives, participants expressed how crucial trust is needed in their clinicians and their healthcare facilities for them to live well with cancer. Building trust also requires a commitment to providing needed services in the community over time and in a culturally responsive way. One participant noted, “providers don’t take the time needed to develop a trusting relationship for those who are ill to feel comfortable sharing.” AI/ANs may encounter bias against them in the healthcare facilities, thus leading to them not want to return:

“She experienced a hospital post a sign saying, ‘No Camping’ that was directed to American Indians due to large families coming into the hospital.”

Further, one patient expressed concern that she couldn’t even trust her clinicians’ intents.

“…are they just practicing with all of us? Are they just experimenting with all of us? You never know what’s going on. And so, I just had to take it with a grain of salt because if I thought too much about it, it was like too scary.”

This mistrust of clinicians may factor into patients’ decisions on which care pathways to pursue and requires clinicians to operate with both cultural humility and trauma-informed care. Further, facilitating and promoting care from clinicians who are themselves AI/AN was deemed crucial. One Tribal leader mentioned, “…a lot of it is they just need somebody to talk to. I think having, building that trust with people who can be trust[ed] because they are, they’re Natives, they’re local.”

Table 2 contains exemplar quotes for each theme.

Table 2.

Exemplar Quotes by Theme.

Theme: Cultural considerations for clinicians

“...If a family member is visiting them and they want to smudge them... just understanding that that’s part of our culture...just letting them do little things like that, you know.”  “.Include the whole family. When you are talking to the patient on what’s going on.” “Family may not always be husband, daughter, grandma, grandpa. It might be a whole bunch of friends or neighbors...it’s not always the same.”  “...If they [clinicians] are going to come here to provide services for people, they should receive an orientation of our culture.”

Theme: Psychosocial support  “...I know when I was up there [counseling] was offered. Every time I was in a hospital when I had to... stay in there for my chemo treatments. They would tell me it’s offered, we’re here for you. But when I came back [to my reservation], it wasn’t here.”  “.If we could find somebody who’s willing to go into the homes with palliative care patients and help them to set up a schedule and then just be somebody that they can vent to because I know it’s really frustrating taking care of a terminally ill family member. So I think, um, just being somebody that, just being somebody’s sound[ing] board, you know, just being a resource...”  “We’ve had quite a few women in [location] that have had breast cancer, and they all reached out to me and told me their stories, and it’s really important for people to talk to other cancer survivors because for me, talking to somebody who went through what I went through, what I was going through, helped me a lot. I think that’s really important that people talk to other people who are going through...what you’re going through.”

Theme: Trust  “Providers don’t take the time needed to develop a trusting relationship for those who are ill to feel comfortable sharing.”  “She experienced a hospital post a sign saying, ‘no camping’ that was directed to american indians due to large families coming into the hospital.”  “...It’s a little frustrating, like for a caregiver or a person dealing with cancer or that family because you get treated real good at one place, and then you go to another and the treatment is completely opposite, and it’s a lot for, more so the person with cancer because they’re already dealing with enough, and then on top of it they have to deal with rudeness.”

Discussion

In discussing these results, our CABs were helpful in synthesizing key recommendations surrounding building trust that clinicians caring for AI/AN patients should consider. It is critical that attention be directed toward building trusting relationships with AI/AN patients through cultural education and communication training, including both systems and individual approaches.

At the individual level, clinicians should consider learning key phrases/words in Tribal languages (eg, an introduction), asking if the patient would like another person in the exam room (family or nurse), and recognizing that questions may not be forthcoming (and being prepared to offer examples of questions other patients/families have had). It may also be important to ensure that patients have opportunities for traditional healing and/or ceremonies (eg, inipi, smudging, tobacco ties, etc.) if they are interested, while at the same time, not assuming that an AI/AN patient practices traditional ways.

At the healthcare system level, it would be important to ensure that all clinicians receive cultural orientation training that is revisited annually. It would also be helpful to display key phrases in Tribal languages and traditional artwork in the healthcare environment. Interview participants also emphasized that it is crucial to have a pipeline for training AI/AN clinicians, so AI/AN patients can be cared for by AI/AN clinicians. This is in keeping with evidence suggesting that when patients and physicians share the same race or ethnicity, the result is vastly improved care. This includes improved shared decision-making and medication adherence, as well as reduced physician implicit bias.³¹

Ford and Dahlin recently provided recommendations to empower palliative care clinicians with the knowledge needed to provided culturally congruent care to AI/AN people with serious illness.³² Oldani and Prosen also discuss strategies clinicians can use to provide trauma-informed care for AI/AN patients, including a set of questions clinicians can ask themselves to build cultural humility.³³

Talking circle and interview participants were also quite clear that they experienced a lack of psychosocial support in their communities, and offered practical solutions that healthcare systems could implement, such as offering support groups. Here, especially, it would be important that clinicians providing psychosocial support are AI/AN and from the communities they are serving. Similarly, Nelson et al describe how leveraging AI/AN community assets and recognizing end-of-life support as being a community-wide effort are key for supporting these patients with serious illnesses in a Great Plains reservation-based community.³⁴

Mistrust related to the health care system may be an important cause of racial disparities within our systems, of which AI/ANs experience many.⁹ Our team felt it would be helpful to move away from a blame model, eg, “the patient is mistrusting” or “they just need to trust the medical team” to a model where the onus is on the clinicians to earn trust. We need to prove ourselves trustworthy. We must work to address the factors that create mistrust among AI/ANs, which includes addressing and acknowledging both past and current mistreatment.³⁵ Particularly during serious illness conversations, we must ensure we are starting from a foundation of earning trust before attempting to address emotions or engaging in shared decision-making.³⁶

This study’s findings and the suggestions of our CAB align with similar research on providing serious illness care for minoritized populations. This includes the need to equip clinicians with sensitivity, personal awareness of biases, and concrete skills needed to remove interpersonal and structural barriers to equitable care and foster antiracist, evidence-based, empathic communication.³⁷ In addition, it is crucial to promote asset-based, community-clinician partnerships.³⁸ We especially appreciate Dr Jaramillo and colleagues’ recommendations on addressing barriers to care that hinder reliable relationships with healthcare works for AI Elders with key strategies including “increasing health systems navigation to improve overall access to healthcare and connect reluctant patients with healthcare providers, workforce improvements to address turnover and continuity of care, and changes to health policy and funding at the state, tribal, and federal levels to establish and sustain a full complement of healthcare services that Elders need.⁹” These authors also stressed the importance of fostering bidirectional learning between AI Elders and clinicians and increasing access to social support for isolated individuals.⁹

This study has several limitations. As participants resided on 3 different Tribal reservations, they received care in quite a variety of locations (geographically as well as at IHS facilities or larger tertiary care centers or cancer centers throughout the state). However, our goal was to learn broadly about these 3 Tribal communities’ perspectives on what skills, infrastructure, and mindset that clinicians need when caring for AI/ANs with serious illness. These perspectives from a variety of locations and care settings may make our results more relevant to clinicians caring for AI/AN patients from a variety of regions.

Lastly, we utilized several qualitative data gathering methods to interview AI/AN participants. While talking circles may be considered a non-traditional qualitative method, they were chosen with guidance from our Native research team as well as our CABs, to allow trust- and relationship-building for AI/AN cancer patients and caregivers. Alternatively, our Native team members and CABs felt it most appropriate to interview Tribal leaders and traditional healers individually. We feel that utilizing a variety of qualitative methodologies was a way to demonstrate cultural responsiveness and foster trust-building, which was more important to us than utilizing a single qualitative methodology for this CBPR study.³⁹

Conclusion

Any clinician caring for AI/AN patients with serious illness such as cancer needs to understand clinician-related factors that AI/ANs say impact their care. There is an increased need for clinicians to factor in the importance of cultural considerations and for healthcare teams to develop systemic strategies for improving cultural education. Having clear mechanisms for psychosocial support for these minoritized patients, such as support groups or home-based care provided by community members is also a demonstrated need. Another overarching theme was the need for clinicians to actively seek to develop trustworthiness and earn trust when caring for AI/AN patients experiencing serious illness.