Nephrology and Palliative Care Providers' Beliefs in Engaging American Indian Patients in Palliative Care Conversations

Abstract

Background:

American Indians with chronic kidney disease are twice as likely to develop end-stage renal disease. Palliative care is underused by American Indian patients, although studies show it is not due to an unwillingness to engage in conversations about end of life.

Objectives:

The aim of our study was to explore the experiences and beliefs of Nephrology and palliative care providers of one tribal community with respect to engaging patients and family members in palliative care.

Design:

Using an interview guide, individual, in-depth interviews were conducted between March and August 2019 with eligible participants. We used constant comparative analysis of interview transcripts.

Setting and Subjects:

Our study sample included eight participants, including four Nephrology providers and four palliative care providers.

Results:

We identified five themes, including (1) providers' stereotypes, (2) patients' mistrust of providers, (3) patients' end-of-life preferences, (4) available community resources, and (5) patients' family dynamics. Negative stereotypes were present in every theme, although most participants did not acknowledge the role stereotypes played in establishing trust and building therapeutic relationships conducive to end-of-life discussions.

Conclusion:

Providers serving American Indian patients with kidney disease should consider training in trauma informed care and cultural sensitivity. Negative stereotypes of American Indian patients may impact provider's ability to build trust, a key component of end-of-life conversations, and contribute to misperceptions related to family dynamics, end-of-life preferences, and available community resources.

Introduction

The Renal Physicians Association recommends palliative care for all patients with end-stage renal disease (ESRD)¹ for pain and symptom management, including psychological and spiritual aspects of serious illness. American Indian and Alaska Native (AI/AN) peoples with chronic kidney disease (CKD) are twice as likely as Whites to have ESRD.² Yet, people with CKD as well as AI/ANs face greater challenges accessing palliative care and hospice, and are less likely to have do-not-resuscitate orders and advanced directives.^3–7 For example, a recent study reported over 90% of older AI/ANs had not heard of palliative care and 93% had never heard of a living will.⁸ These statistics are concerning as research findings suggest AI/ANs want to die at home, prefer to have family involved, and want to have cultural preferences integrated.⁹

While values and beliefs with respect to end-of-life and death vary among AI/ANs,¹⁰ the lack of palliative and end-of-life care among AI/ANs is not a reflection of their unwillingness to discuss end-of-life care.^8,11,12 Moreover, research^11,13 has found AI/ANs were open to discussing and documenting their end-of-life care preferences, services that palliative care providers can offer. Furthermore, AI/ANs are as likely as Whites to discuss code status, choose hospice, and elect a do-not-resuscitate order when their health care providers have been trained in culturally informed techniques.¹²

Barriers to AI/ANs receiving palliative care include lack of Indigenous models of care, limited accessability,⁹ providers' misunderstandings about AI/AN decision making,⁴ respectful communication from providers,^4,9 and hospital policies.⁹ Palliative care models that incorporate traditional practices,¹⁴ address existing gaps, involve traditional healers, offer continuing education to providers, and are flexible and the most successful with AI/ANs.⁹

Thus, our study explored the experiences and beliefs of Nephrology and palliative care providers who serve members of a tribal community living on tribal lands with respect to engaging patients in palliative care conversations. Our guiding research question was, “What are the experiences and perceptions of Nephrology and palliative care providers in engaging American Indian patients with CKD in palliative care conversations?”

Methods

Using qualitative methods, our study was informed by social constructivist theory, which posits that each person's reality is shaped by their individual experiences, which are expressed through language and culture.¹⁵ Our study was approved through the Institutional Review Board at the PI's university (IRB reference number 1352713-1) on February 19, 2019.

Participants

Our data were from a larger study of rural patients with CKD (n = 13) and their caregivers (n = 10) as well as Nephrology (n = 5) and palliative care providers (n = 5) to identify best practices engaging patients and family members of persons with CKD in palliative care conversations. For our present study, we examined data only from the providers who served American Indian patients. Both the parent and the current study used reputational case selection, a variant of purposive sampling that involves selecting cases based on a recommendation of an expert or key informant.¹⁶

We recruited Nephrology and palliative care provider participants through an e-mail message from the PI (E.A.), a DSW and LCSW. Currently, there is only one Nephrology and one palliative care practice serving this tribal community. Interested potential participants were instructed to self-identify by contacting the PI, who confirmed eligibility criteria. All potential participants were deemed eligible and informed consent was obtained verbally and in writing by the PI, with a final analytic sample of eight providers, including two physicians, three nurse practitioners, two social workers, and one registered nurse. We recruited participants until data saturation was achieved with no new emerging information.

Data collection and analyses

We developed an interview guide, see Table 1, for the one-on-one, in-depth, semistructured interviews conducted by the PI. Interviews were conducted from March through August 2019 and took place in the provider's office (n = 1), dialysis facility office (n = 3), or through a virtual meeting platform (n = 4). Interviews lasted an average of 45 minutes, which were audiotaped, professionally transcribed, and crosschecked for accuracy by the PI.

Table 1.

Discussion Guide

1. Are your experiences different working with Native American patients and families?

2. Tell me about your experiences in engaging Native American family members in palliative care conversations.

3. What has gone well? What has been difficult?

4. What strategies have you found effective in working with family members of Native American patients regarding palliative care?

5. What strategies are ineffective?

6. How are patient and family member's desires (regarding palliative care) similar or different?

7. What do you do to support family members?

8. What are the unique issues providers of Native Americans such as yourself in trying to provide palliative care?

9. How is providing palliative care to Native American patients and families different than non-Native American families?

Our analytic method was informed by Grounded Theory Design¹⁷ because of its ability to collect data that generates meaning and understanding. Individual transcripts and team debriefing recordings formed the data for our analyses. We used a constant comparative¹⁸ approach and memoing with qualitative management software. We began with multiple readings of each transcript by the PI and the research assistant (C.T.), an MSW; and an additional MSW (N.A.) to gain awareness and general understanding of participant experiences and perceptions followed by line-by-line coding, reading, and re-reading the transcripts. The PI and the research assistant independently coded the transcripts then cross-examined them for inter-reliability. Researchers (E.A., C.T., and N.A.) regularly met to discuss the coding framework, and gain consensus on emerging themes and subthemes until no new themes emerged.

Results

Table 2 presents descriptive characteristics of the participants, which included five females and three males. With respect to race and ethnicity, seven participants were White and one was non-White; none was AI/AN. Our analyses of the transcripts, identified five themes, including (1) providers' stereotypes, (2) patients' mistrust of providers, (3) patients' end-of-life preferences, (4) available community resources, and (5) patients' family dynamics. Table 3 presents exemplar quotes by theme.

Table 2.

Participant Information

Characteristic	Qualitative study sample (n = 8)
Female sex, n (%)	5 (62.5)
Race
White	7 (87.5)
Non-white	1 (12.5)
Specialty
Nephrology	4 (50)
Palliative care	4 (50)
Employed by
Dialysis facility	1 (12.5)
Nephrology clinic	3 (37.5)
Palliative care	4 (50)

Table 3.

Exemplar Quotes by Theme

Exemplar quotes by theme
Stereotype
	“some of them have very nihilistic attitudes. ‘Like well, it doesn't matter what I do. I'm going to die anyway.’ That kind of thing. And they have very poor compliance with medical therapy, in part probably because of their nihilistic attitudes.” (Participant 4)
	“Believe or not, even though they have the casino and they are awash with money, there are still some very disparate inequalities. Many of them have very poor living conditions. Of course, the drug use is a big problem there—drugs, alcohol. So, all those are hindrances to taking care of their health.” (Participant 4)
	“That's part of their culture…the history of being able to [have] the herbs and the pharmacology from the original dances and celebrations and things like that you know. It's, from what I can see, it's transition into, ‘We use marijuana now instead.’” (Participant 1)
	“As a Provider, it's just unique having to deal with the [American Indian] patients because they are stoic. We really have to build that rapport…It takes a very long time. Several of the older males seem to be worse, but I've got some females that won't talk to me either. I mean, you just have to persevere with that, I think…this clinic more than anything has stretched my ability to be quiet and deal with silence because you'll ask a question and I swear some of these people are just waiting to see how long you'll put up with it and just not give up on them. So, you might ask a question and you just have to sit there.” (Participant 3)
Trust
Attributed to personal characteristics	“there is a bit of distrust. I think it takes them awhile to come to trust you.” (Participant 4)
Attributed to personal characteristics	“The Indian population is nearly impossible. I mean just nearly impossible. We feel like they almost just tolerate us kind of thing and they won't even let you help at any education level. They do not want help from anyone outside of the tribe and that's been a huge challenge for us.” (Participant 6)
Attributed to personal characteristics	“You can tell as soon as you walk in just by the nonverbal reactions of, ‘Oh, she's one of those.’ There's a lot of the Trail of Tears, the land, a lot of that still resentment and so we have to be—or I have to be—very cautious and respectful of when I'm walking into their home, but trying as best as I can to break down that barrier as well. That was already set up before I walked in.” (Participant 5)
Attributed to personal characteristics	“I think it's—the trust factor's harder to—and within the Native American community, there is still a broad range of attitudes. The ones that… are pretty middle class and went to college and—all that…lived off the boundary—are probably easier to establish…relationships with than the ones that are more traditional.” (Participant 8)
Attributed to personal characteristics	“It does look different in the Native American because they're truly—they're more independent. They're definitely more stoic and you kind of—and they're not trust-worthy of—they're not trust-worthy of [other tribe members], let alone anyone else, but trying to get somebody to come in.” (Participant 3)
Rightful response based on history	“Just because of the dynamics between our government, what our government's done to Native American people over the years—just trying to remember when you're on the reservation that this isn't just another town” (Participant 7)
Rightful response based on history	“it takes me probably a good four or five months more to build that rapport with just because of breaking down those barriers of my ethnicity, the color, the way I speak, my cultural, their cultural, and trying to have a better understanding of things.” (Participant 5)
Rightful response based on history	“This is an ancestral homeland, kind of things like that, just trying to be sensitive and just same thing with angry family members or people who might be suspicious of you. Just giving them the space to talk, giving them the space to express their feelings if they have a concern about a white person coming in to help them with something like [a major health concern].” (Participant 7)
Attributed to personal characteristics	“You're an outsider and they just don't want you there. I think I've had our social worker's been told that before. ‘You don't belong here.’” (Participant 6)
End of life
	“I mean, you can see that they don't want to stop [dialysis] because they are dependent on the monies that are coming in.” (Participant 3)
	“they will very quickly go to the hospital with a pain crisis or some other disease exacerbation. They'll just go to the hospital and then the hospital will call us and they know what's going on. They know that we're in there and we're trying to help and even the primary care will call and they also have—a lot of them have the same frustration is that a lot of those folks just don't seem to want the help and they definitely don't want hospice.” (Participant 6)
	“You see the fatalistic attitude, honestly, with the Native Americans a lot more—not even being rural—just the Native Americans a lot more than you do see with a European culture…The, the attitude, of um, ‘I have diabetes, at some point, you know, it runs in my family, I've had 4 relatives that have been on dialysis. At some point I am going to be here, so I really don't care what I do. I am not following my diet, I am not following, you know, medications.’ It's that fatalistic and that sense, ‘I am gonna be here at some point in time…Because now I am on dialysis technically I am disabled.’ Which yes, you are according to Medicare. ‘I don't have to work, the tribe will pay for everything’…You see some of that attitude. Whereas in the European population its more of…’What do I need to do? I'm scared…What is this going to be like. I pushed it off as far as I can now I'm so sick. You know I can't do anything. How do I keep working? How do I do this?’ Because there isn't the same type of support that the tribe gives…the Native Americans as opposed to European.” (Participant 1)
	“it seems like a lot of the people on the reservation are predominantly Christian, but still there's that whole pushback of signing a DNR.” (Participant 2)
	“I think it's a lack of understanding too by some of the culture—by some of the support system—meaning they know they're sick, but they don't really think they're that sick like it's gonna kill them.” (Participant 5)
Resources
Abundant	“Native American have a whole ton of services available to them that I can't get for my other patients. The pharmacy there will mail out prescriptions to Native Americans; that's not an option for my non-Native American. I mean, they have counseling available…Whether they use them is a whole different…” (Participant 3)
Abundant and scarce	“Most of them go to the [Tribal] Indian hospital, which is a fantastic facility that's state of the art health care, but we are unable to electronically prescribe. Most Schedule II medications, we cannot electronically prescribe to that pharmacy because their system is extraordinarily old. And so that becomes a problem with writing pain medication prescriptions because they basically have to have a hard copy and that's just not the way we're set up..” (Participant 6)
Abundant	“There is an aversion to hospice and there are tribal services that pretty much take the place of hospice. So, I have noticed that when we go in and we provide palliative care services, if they already receive those—I think they're home health services through the reservation—yeah, they don't need hospice. But they're already receiving everything they're going to need. So, that's one thing I've noticed.” (Participant 2)
Scarce	“I honestly think Indian Health Services has tried to get their patients on dialysis to get the Medicare ESRD benefit because they can get payment for that.” (Participant 3)
Scarce	“If I have somebody that just has tribal insurance, I can't just send them to the podiatrist. I have to get a contract that's set up with [Tribal] Indian Hospital with the podiatrist…So, the tribe has their own podiatrist that they use and they have their own cardiologist. So, if there's any reason that I want them to go somewhere else, that becomes an issue too.” (Participant 3)
Scarce	“We have a lot of turnover with professionals out here. So, that makes it challenging too to kind of have that consistent care with especially some of these special cultures because they don't understand that they built their relationship with this doctor and this doctor has left.” (Participant 5)
Family
	“We have children with drug problems and we have older patients that are watching kids—grandkids as children. Raising them as children or fighting for custody. I mean, we see that a lot down here. And… the children are dead or gone. I mean, they just don't care to participate. And drugs are such a huge issue over here. Right, and several of our older ladies that are doing really well, but they're responsible for minors or fighting to get control of some minors that are in bad situations, and that person is not going to be really receptive about palliative care because then they're going to be, ‘Well, uh-oh. Well, who's going to take care of this person.’ I mean, who's going to take care of these children? They raise them like their own.” (Participant 3)
	“The last couple of people I've referred are very closed and they make sacrifices that I just don't understand. I mean, I don't get it. I mean, like I refuse to do this because it would involve my girlfriend's dog” (Participant 3)
	“Unfortunately, I feel like a lot of their family fabric is pretty tattered. There's a lot of—I'm not saying that it's all like that. Every family has its own dynamics, but they are a lot more—I find more disjointedness, less cohesion I guess, and less support. There are some young people out there who don't have a lot of family support who have pretty bad chronic health conditions.” (Participant 4)
	“It's just it's a different—again it's another different breed… I'm not used to people when we have a family session and things become difficult you try to work it out or you ride it out or we pause it and we say, ‘Okay, well take a break and maybe think about it and come back in a week or so.’ I'm not used to, with this population, of people getting upset, which I am, but slamming doors or screaming and then I don't know what they're saying because they're speaking [the native language] and that's where I'm learning [the native language], but I'm not fluent. And so that's a challenge because I have no idea what they're yelling in their language—which I know is frustrating my patient who I'm advocating for—but at the same time I don't know what she's saying to her family, which she could be elevating the situation too.” (Participant 5)

ESRD, end-stage renal disease.

Providers' stereotypes

Stereotypes are defined as commonly held oversimplified ideas of a group of people.¹⁹ Participants were not directly asked about stereotypes, but they used stereotypical language in each theme when discussing American Indian patient and family behavior. American Indians were frequently characterized as family oriented. Yet most study participants used unfavorable language to describe how it was to engage their American Indian patients in palliative care conversations because they were “fatalistic” “nihilistic,” “nearly impossible,” “a different breed,” have “lack of understanding,” and “stoic.” Several participants discussed their patients' substance use, although none framed it as “addiction.” Participants described how these personal characteristics were barriers for the patients accessing end-of-life resources.

Patients' mistrust of providers

Participants' statements fell into two subthemes: (1) provider perception of patients' mistrust because of patient's shortcomings or patient's fault and (2) provider perception that patients' mistrust was a rightful response based on history of disenfranchisement and mistreatment. Patients' mistrust was seen as impacting end-of-life preferences, use of available community resources, and patients' family dynamics.

Most participants attributed patients' mistrust to patients' shortcomings and due to the lack of trust, American Indian patients do not want help, are noncompliant, are hard to reach, and are uninterested. One participant stated, “The Indian population is nearly impossible. I mean just nearly impossible. We feel like they almost just tolerate us kind of thing and they won't even let you help at any education level. They do not want help from anyone outside of the tribe and that's been a huge challenge for us” (Participant 6).

Conversely, some participants mentioned mistrust was attributed to a rightful response based on history of disenfranchisement and mistreatment by the medical community and the provider's lack of education around cultural sensitivity. Participants suggested to build trust, providers must individualize treatment plans, develop self-awareness, and develop awareness of biases to improve communication skills for sharing code status, make more time for difficult conversations, apologize, and maintain a nonjudgmental attitude.

Patients' end-of-life preferences

Participants described their patients as reluctant to receive any end-of-life care. Participants cited the “lack of understanding” [Participant 1] stated by Participant 5 as, “I think it's a lack of understanding, too, by some of the culture—by some of the support system—meaning they know they're sick, but they don't really think they're that sick like it's going to kill them.”

A participant suggested American Indians' limited financial resources created a reluctance to engage in palliative care conversations with patients and family members because “they [dialysis patients] are an extra source of income” [Participant 3]. Patients were described as either pragmatic about death or fearful of death, unwilling to disclose problems to the providers, and preference for the hospital, and resistant to hospice.

Other issues that emerged included provider beliefs that there was a reluctance to sign a do-not-resuscitate order with many inappropriate “full codes” [Participant 7], limited understanding of palliative care versus hospice, issues around prescribing opioids to tribal members, and incompatible electronic medical records. A participant shared tribal members did not need palliative care because there were so many tribally provided resources. Participants had suggestions about how to respond better to their American Indian patients' end-of-life needs, including increasing face-to-face communication, increasing hands on care, more time with patients, eliminating judgment, creating a palliative care clinic, and communicating with text messaging.

Available community resources

The fourth theme reflected participants' description of health-related community resources available to their American Indian patients. Two subthemes were identified: Abundant and scarce. Most participants suggested that American Indians had access to abundant resources and have an attitude of “I don't have to work. The tribe pays for everything” [Participant 1], although another suggested members do not avail themselves to all of the available services. One participant stated, “[they] are awash with money, [though] there are still some very disparate inequalities” [Participant 4]. Conversely, participants recognized there were resource gaps, provider shortages, need for family caregivers, an incompatible electronic medical record system with the tribe's system, strict tribal policies limiting opioid drug prescriptions, lack of cellphone towers and internet providers, and difficulties getting approval for services from the tribe's health system. One participant highlighted those patients with ESRD who lived on tribal land cannot be served at the local tribal hospital because there are no nephrologists or dialysis equipment, resulting in an 80-minute drive to a hospital.

One participant acknowledged the government has attempted to respond to the historical trauma of American Indians by establishing community resources, such as subsidized housing and food assistance programs, noting the programs did not best meet the needs of the culture, further contributing to trust issues. This participant stated, “Just because of the dynamics between our government, what our government's done to Native American people over the years—just trying to remember when you're on the reservation that this isn't just another town” (Participant 7).

Patients' family dynamics

While some characterized American Indians as having strong family relationships, most participants described patient families as challenging, especially as families' experience problems with substance use, large family size, high emotion, grandparents raising grandchildren, and witnessing multiple family members die from ESRD. A participant described the family structure as being unpredictable by stating, “sometimes you'll have what you think is the family attending and then—all of a sudden—you'll have these other ancestors who just come up and want to be part of the family and I include them, but it's like, ‘Whoa, where did they come from’” [Participant 5].

Discussion

Our study explored the experiences and beliefs of Nephrology and palliative care providers who serve American Indians with respect to engaging patients in palliative care conversations. We identified five themes, including providers' stereotypes, patients' mistrust of providers, patients' end-of-life preferences, available community resources and patients' family dynamics. Collectively these themes illustrate barriers to providing palliative care to American Indians, with the most notable theme being Nephrology and palliative care providers' stereotypes of American Indians. This confirms prior research findings that providers have a negative bias toward American Indians.^20–23

Provider stereotypes can create changes in decision making in medical professionals.²⁴ As many as one-third of American Indian patients report being subject to microaggressions, less overt stereotypic assumptions that are subtly and repeatedly communicated to patients.²⁴ High levels of implicit bias can impact American Indian patients' perception of discrimination, patient–provider interactions, treatment adherence, disparities in treatment recommendations, and pain management.^21,25,26 Microaggressions experienced by American Indians are correlated with increased heart attack, hospitalization, and worsening depressive symptoms.²⁴

Provider stereotypes, biases, and microaggressions can have serious implications for the frail and medically dependent CKD population. Negative stereotyping of American Indians could lead to a misbelief that American Indians can endure pain without medication or other symptom management. Providers who believe American Indians are nihilistic may be reluctant to inquire about any existential or spiritual issues around end-of-life care. Former studies suggest American Indian family members are open to discussions about end of life when providers are trained in cultural humility.¹² However, our study participants only expressedAmerican Indian family members argue more than usual at end of life, often illustrating stereotypes about family dynamics. This could create a sense “not understanding” or can be used to rationalize avoiding a conversation about end-of-life care options.

While some providers believed there are patient–provider issues, most participants did not acknowledge how their personally held stereotypes may contribute to this dynamic. Viewed through a social constructivist lens, if providers perceive their American Indian patients as stoic, fatalistic, and nihilistic, in turn, patients could perceive providers as untrustworthy and uncaring. Such patient–provider dynamics can influence whether patients attend medical appointments, disclose relevant personal information, and/or discuss sensitive topics. As many as 15% of American Indians delayed health care because they feared or anticipated discrimination.²⁵ Our study's finding that providers perceive American Indians as not trusting the medical team was also confirmed in a study of nursing and medical students, which found students perceived American Indians are distrustful of medical providers.²⁷

Our participants perceived their American Indian patients as reluctant to discuss death and dying and are resistant to hospice and do not resuscitate (DNRs). Yet, researchers have found when providers are trained in cultural humility and implicit bias, American Indians are just as likely to engage in end-of-life care conversations.^11–13 Some of our participants believed there is an abundance of community resources for their American Indian patients, so much so, that some believed palliative care may not be needed. Palliative care can improve pain, symptoms, anxiety, and decrease hospitalization,²⁸ but oversimplified and unfounded beliefs about American Indian resources can result in low palliative care referral rates. It is important to also note while some providers saw community resources as abundant, Indian Health Services is only funded at 57% of the needed funding with an average of $3,348 spent per person, below any other federal health program, indicating a lack of resources.²⁹ Furthermore, American Indians have the highest poverty rate among all minority groups,²⁹ contrary to participant statements of the tribe being “awash” with money.

To provide patient-centered palliative care to American Indians, health care providers and researchers must take an honest look at how stereotypes are internalized and how, if unexamined, stereotypes can impact behavior in such a way that blocks the effective delivery of palliative care. American Indians' experiences need to be viewed within the context of historical trauma, including forced displacement, assimilation, betrayal, domination from colonial settlers, and the impact on multiple generations.³⁰ When entire communities face cultural genocide, survivors often experience disenfranchised grief and multigenerational trauma.³⁰ Braveheart states “we assert that the historical view of American Indians as being stoic and savage contributed to the dominant societal belief that American Indians were incapable of having feelings.”³¹ This can result in “survival syndrome” or post-traumatic stress disorder, and can be accompanied by numbing, substance use, and preoccupation with death and persecution.

Our study is the first published study to examine the experiences and perceptions of CKD providers of American Indians related to palliative care. The use of a qualitative design allowed for in-depth exploration of providers' perceptions, subtleties, and complexities related to engaging in palliative care conversations in one American Indian tribe. Yet, our study is limited because it reflects providers in one region that serve one tribe. This dynamic may be different in other regions depending on their relationship with local palliative care providers and whether the providers are American Indian or a non-White racial group. While a national study would probably not address this issue given the great diversity between the 574 federally recognized tribes,³² it is important to recognize that harmful provider stereotypes affect other Indigenous peoples worldwide.^33–36

Our findings illustrate the need for clinical education for providers when engaging with American Indian patients. Future research efforts should adopt a community-based approach that engages tribal members and incorporates traditional approaches, cultural sensitivity training, and education about the role of provider stereotypes and implicit biases. Efforts to increase palliative care access to American Indians and Alaskan Natives should be expanded to other specialties, such as Oncology, Pulmonology, and Cardiology.

Like others, we also suggest that efforts to earn trust with American Indians and Alaskan Natives must be grounded in medical providers' training in cultural sensitivity.^37–39 Cultural sensitivity requires acknowledging how stereotypes and implicit biases organize our behaviors and actions,⁴⁰ and thus impact the way we interact and communicate about end of life. Providers serving American Indians and Alaskan Natives and/or other Indigenous peoples should consider how to earn trust, including openly discussing patient concerns around trust.³⁹ This can help providers shift from a deficit lens to one of resilience, strength, and perseverance.

Efforts to build trust and provide culturally sensitive care can be enhanced by using trauma-informed approaches. This collaborative model of mutual support promotes safety and establishes trust and transparency at policy, cultural, structural, programmatic, and practice levels.⁴¹ Palliative care organizations should use this approach to evaluate how policy and structures may impact AI/AN access to palliative care services, and trauma-informed approaches at a practice level may help engage in conversations about palliative care. Social workers, trained in the application of trauma-informed approaches and culturally sensitive care at an organizational and policy level,⁴² can be instrumental health care team members.

Footnotes

Authors' Contributions

E.A., Principle Investigator; created the research design, led data analysis, and drafted and revised the article; C.T., Contributed concept, analyzed and interpreted data, and contributed to article drafts and revisions; R.T.G., Contributed concept, interpreted data, and contributed to article drafts and revisions; N.A., Contributed to data analysis, and contributed to article drafts and revisions; B.W., Contributed to concept, interpreted data, and contributed to draft and revisions.

Acknowledgment

The authors would like to acknowledge Dale Lupu, MPH, PhD, for her mentorship in this article.

Funding Information

This work was supported by a grant from the Cambia Health Foundation through the Sojourns Scholar Leadership Program.

Author Disclosure Statement

No competing financial interests exist.

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