Palliative Care for American Indians and Alaska Natives: A Review of the Literature

Abstract

Background:

Little is known about optimal palliative and end-of-life care for American Indians and Alaska Natives (AIs/ANs).

Methods:

We searched MEDLINE, the Cochrane library, EBSCOhost, (PsycINFO, CINAHL Complete), and the University of New Mexico (UNM) Health Sciences Library and Informatics Center Native Health Database for search terms related to palliative care and AIs/ANs as of December 1, 2015. We included English language, peer-reviewed articles describing palliative care projects, programs, or studies in AI/AN populations or communities. We excluded case series, opinion or reflection pieces, and dissertations and articles addressing Pacific Islanders.

Results:

Our search strategy yielded 294 references, of which we included 10 publications. Study methods and outcome measures were heterogeneous, and many studies were small and/or subject to multiple biases. Common themes included the importance of culturally appropriate communication, multiple barriers to treatment, and less frequent use of advance directives than other populations.

Conclusions:

Heterogeneity of study types, population, and small sample sizes makes it hard to draw broad conclusions regarding the best way to care for AIs/ANs. More studies are needed to assess this important topic.

Introduction

Palliative care has been demonstrated to improve the quality of life for patients with serious and life-threatening illness.^1,2 American Indians and Alaska Natives (AIs/ANs) have poor access to care, consistently worse health outcomes, and higher burden of chronic diseases compared with their non-AI/AN counterparts.³ Given this constellation of health-related conditions in this population, palliative care could potentially be useful for many AI/AN patients and families. Research has demonstrated less hospice use among minorities in general, and one study suggests this is also true for AI/AN patients,^4,5 although it is not clear why this might be. Little is known about optimal end-of-life (EOL) care for AIs/ANs and the impact of hospice and palliative care services at EOL for AIs/ANs.

Numerous studies have established the persistent health disparities in the 566 federally recognized AI/AN communities across the United States.^6–8 AI/AN people are nearly twice as likely to live in poverty as the general U.S. population (29.2% vs. 15.9% for all U.S. citizens).⁹ A higher percentage of AI/AN people (40%) live in rural areas than any other racial group.¹⁰ Common disparities for rural as opposed to urban populations include higher rates of diabetes, cancer, and injury.^11,12 AIs/ANs have the highest rate of diabetes in the United States (15.9% vs. 9.3% in the general population),¹³ later diagnoses, and high rates of death from liver disease and cirrhosis.^14,15

The higher incidence of chronic disease in AIs/ANs has led to a growing need for palliative and EOL care.^16–18 Domer and Kaur have reported that access to these services is often limited or nonexistent in AI/AN communities.¹⁹ There are also significant and well-propagated myths regarding AI/AN patients that are likely to have a significant effect on EOL care, including the beliefs that AI/AN cultures universally hold a taboo against discussing death and dying, AIs/ANs will not elect “Do Not Resuscitate” (DNR) status, and AIs/ANs will not choose hospice services if offered.²⁰ The lack of information about AIs/ANs at EOL interferes with the delivery of culturally sensitive care for patients and is thus likely to adversely affect the care received.

The purpose of this systematic review is to summarize the literature on palliative and EOL care in AI/AN communities. It is important to review the body of knowledge to provide a comprehensive overview of the existing literature, which will help inform culturally congruent clinical care. This summary will also identify gaps in existing knowledge that may direct future research and policy.

Materials and Methods

We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines in planning and executing this systematic review of the literature.²¹ Experts in anesthesiology, library science, medicine, nursing, palliative care, and surgery assisted with developing search strategies, performing database searches, and reviewing articles for this work.

Selection criteria and literature search

A primary objective of this review was to focus on articles focused on palliative care and EOL issues within AI/AN populations as a discrete group. Our inclusion criteria encompassed English language, peer-reviewed articles describing palliative care projects, programs, or studies in AI/AN populations or communities. We excluded case series, opinion or reflection pieces, and dissertations and articles addressing Pacific Islanders.

In November and December 2015, an experienced health sciences librarian searched PubMed/MEDLINE (1966–December 1, 2015), the Cochrane Database of Systematic Reviews (1992–December 1, 2015), EBSCOhost databases PsycINFO (1880–December 1, 2015), CINAHL Complete (1937–December 1, 2015), and the UNM Health Sciences Library and Informatics Center Native Health Database (1692–December 1, 2015). We incorporated both keyword and subject headings in our search strategies, using various terms associated with palliative care: “palliative care,” “palliative medicine,” “hospice,” or “terminal care” were combined with terms related to “Native American,” “American Indian,” “Alaska Native,” or “Native Hawaiian” populations, including more than 300 designated tribal and Pueblo names. Our searches were limited to English language articles. There was no date restriction. We included only articles related to AIs/ANs, including studies from Canada, and excluded articles that grouped indigenous peoples together and did not specifically break out the data about AIs. We excluded articles with fewer than 10 participants, case series with fewer than 10 cases, opinion or reflection pieces, and abstracts or videos. The specific search strategies for each database are available on request. In addition, the authors reviewed included articles' reference lists, but did not identify any additional articles eligible for inclusion that were not already included in the initial searches.

A total of 294 citations were retrieved from the searches performed (Fig. 1). The results were imported to Zotero, a free citation management tool. The lead author (S.G.) conducted an initial screening of the search based on titles and abstracts, reviewing 274 nonduplicated citations to identify items not obviously fitting the inclusion criteria as well those not covering AIs/ANs as a discrete group. The lead author excluded 223 citations in this first pass, resulting in 51 eligible abstracts for review. Many of the papers excluded were not related specifically to AIs or ANs, or not related to palliative care, and many of those that were related were opinion pieces. Nineteen articles were then excluded by the lead reviewer based on the abstract. Following this first pass, seven reviewers (L.M., E.A.H., C.C., E.F., E.F., B.F., K.H.) assessed 32 full-text articles. Each article was independently reviewed and documented by two participants utilizing a predefined worksheet. Special considerations for selection included patient population, study design, intervention, healthcare setting, and outcomes. Of the 32 articles reviewed, 12 articles were excluded by both reviewers for consideration in this article, and 8 were included. Reviewers disagreed on inclusion in 12 instances. The lead author and another author (S.K.M.) who was not a reviewer discussed the articles in which there was disagreement and came to a decision to exclude nine of these articles and include three. At that point, one more article was excluded because it used the same dataset as another included article, and in our opinion offered lower quality methods. The information from ten articles was used to produce the content of this work.

FIG. 1.

Results

Types of studies and interventions

Several studies that were excluded evaluated themes related to death in Native American communities.^22–24 Two excluded articles provided a framework for research but did not actually describe research.^25–27

The summary of included studies is described in Table 1. Eight studies were completed in the United States and two in Canada. Two were in rural settings,^27,28 two in urban settings,^20,29 and six did not specify.^{27,28,30–35} Study quality was often poor. Five studies had fewer than 100 participants or did not describe the number of participants.^29,31,32,35 All but two studies were conducted in a single center or small geographic area. The two largest studies were retrospective and relied on secondary data.^30,33 Many studies did not report how the participants were chosen. There were no randomized controlled trials, and no studies incorporated blinding of involved participants.

Table 1.

Summary of Included Articles

Study	Intervention	Study description	Population	Setting	Community-based participatory research?	Outcomes
Guadagnolo et al.³⁰	Compared data on hospice utilization	n = 182,006 patients; retrospective cohort comparison	U.S. non-Hispanic whites and Native Americans >65 years old with specific cancer diagnoses	Secondary data analysis	No	Fewer N.A.s utilized hospice services than did non-Hispanic whites (54% vs. 65%, p < 0.0001)
Colclough et al.³⁵	Interviews with patients, families, and healthcare providers	N = 58 Native American family members, patients, and healthcare providers; qualitative interviews using grounded theory analysis	Unspecified American Indian tribe in “a frontier state”	Community	Yes	The concept of having a choice for treatment, that is, “I made my decision” vs. “I defer choice to others” was largely unknown to the members of this tribe. They thought they had no choice but to do what the doctors told them. Healthcare providers believed patients autonomously made treatment decisions
Johnston et al.²⁷	n/a	Literature review and qualitative interviews with seven experts with Mi'kmaq health and cultural research expertise	Members of the Mi'kmaq Nation of Nova Scotia.	Community	No	Three themes emerged: (1) Colonialism, (2) Gaps in the structure to provide healthcare, (3) Lack of cultural competence
Hodge et al.³¹	Development of a symptom toolkit for survivors of cancer	n = 132; Focus groups using constructivist Grounded Theory techniques to analyze the transcripts	Southwest USA Native American cancer survivors, their family members, and community	Outpatient clinics that served only Native Americans	No	Creation of an educational toolkit for symptom management for cancer survivors
Marr et al.²⁰	n/a	n = 360 non-Native and 53 Native patients; retrospective cohort	Patients seen in consultation at one academic hospital in New Mexico, USA	Inpatient consult	No	(1) P.C. consult increased the rates of family meetings and DNR order for Native and non-Native patients; (2) more N.A. patients die in the hospital; (3) hospice disposition was not significantly different
Arenella et al.³²	Creation of training program for I.H.S. providers in palliative care	N = 89 I.H.S. providers	I.H.S. system	n/a	No	Increased provider-reported knowledge of and confidence in providing palliative care
Kelly et al.²⁹	Focus groups	N = 10 family members; phenomenological approach using qualitative in-depth interviews	Bereaved family members at a health center in Ontario, Canada	Community	No	(1) Importance of respectful communication, including interpreters (2) Caregiving should include access to spiritual modalities (3) Facility should have space and kitchen to allow large number of family members to visit
Levy et al.²⁹	n/a	N = 1,962,742 patients; retrospective cohort	Patients admitted under Medicare benefit to a skilled nursing facility in 2011 of all ethnicities	Secondary data analysis	No	Native Americans were significantly less likely than Caucasians to have DNR (adjusted OR = 0.62) or do-not-hospitalize (OR = 0.67) directives
Kitzes et al.³⁴	n/a	N = 114 patients; retrospective review	I.H.S. patients >50 years old who died from specific causes	New Mexico, USA	No	Limited documented evidence of palliative care services, no documentation of hospice referrals, 95% of charts without documentation of communication regarding prognosis or EOL issues
DeCourtney et al.²⁰	Development of a symptom management training program for family and community, and coordination of palliative care delivery	Not described	Palliative care in a very rural community in Southwest Alaska	Community	Yes	Increased death at home; increased DNR/comfort care

DNR, do not resuscitate; EOL, end-of-life; OR, odds ratio.

Outcome measures

The overwhelming number of studies was qualitative. Outcome measures were heterogeneous among studies, with three studies reporting themes,^27,29,35 three reporting program development,^28,31,32 and four reporting quantitative data.^20,30,33,34

Study findings

Due to the heterogeneity and small number of studies that met our inclusion criteria, it was difficult to identify consistent themes or outcomes from the studies analyzed. Five of the studies described utilization or impact of palliative care and/or hospice services among AI/AN populations.^{20,28,30,33,34} Two large database studies found that AI/AN patients were less likely than other populations to have DNR or Do Not Hospitalize (DNH) orders or to utilize hospice.^30,33 A retrospective review of Indian Health Service (IHS) patients also found limited documentation demonstrating use of palliative care services or hospice referrals in patients more than 50 years old who died from specific causes. Two of the studies reported on the impact of palliative care services on AI/AN patients and found that palliative care consultation increased DNR orders.^20,28 AI/AN patients seen during in-patient palliative care consultation were more likely than non-AI/AN patients to die in hospital but did not differ from non-AI/AN patients in the frequency of referral to hospice.²⁰ A community-based palliative care intervention resulted in an increase in the number of patients who died at home.

Three studies reported on findings from interviews conducted with AI/AN patients, healthcare providers with expertise in AI/AN culture, or AI/AN family members.^27,29,35 Results from these qualitatively identified several key themes related to the provision of palliative care in this population: (1) gaps in structure needed to provide culturally appropriate care,^27,29 (2) lack of cultural competence during provision of healthcare,²⁷ (3) disparities in understanding of AI/AN patient autonomy during medical decision making,³⁵ (4) importance of respectful communication, including the use of interpreters,²⁹ (5) importance of spiritual practices as part of healthcare,²⁹ and (6) colonialism.²⁷

Two of the studies focused on development of palliative-care related education.^31,32 One of the studies was specifically focused on creation of an educational toolkit for symptom management in AI/AN cancer survivors,³¹ while the other described a palliative care training program for IHS providers.³²

Discussion

State of current literature

The purpose of the current literature review was to examine the currently available literature regarding palliative and EOL care for AI/AN patients to summarize what is currently known in hopes of improving the delivery of culturally sensitive care for this patient population and to highlight areas where increased study is needed. This review resulted in only 10 articles that met inclusion criteria, highlighting the limited data on optimal delivery of palliative and EOL care for AI/AN patients and families.

The studies that described the use or impact of palliative care and/or hospice services among AI/AN populations revealed diminished use of DNR or DNH orders relative to other patient populations.^20,28,33,34 In addition, there is typically limited documentation of discussions regarding palliative care or hospice in AI/AN patients before death.³⁴ Utilization of hospice services appears to be less among AI/AN patients.^30,34 Although many AI/AN communities lack access to hospice due to the stringent Medicare requirements for hospice development or due to rural locations, it seems unlikely that these issues alone explain these disparities. Based on current literature, it is unclear whether AI/AN patients are not choosing DNR/DNH orders or whether these options are never discussed. As demonstrated by the study by Marr et al.,²⁰ palliative care consultation, which includes discussions regarding decisions related to resuscitation, can impact AI patients' choices regarding DNR. They reported that palliative care consultation was associated with increased rates of family meetings and DNR orders for AI patients. In addition, patients of all ethnicities were referred to hospice at equal rates when palliative care consultation was performed, suggesting that culturally sensitive palliative care consultation may impact EOL care preferences.

Several of the included articles address where and how AI patients die. Notably, AI patients at the University of New Mexico were more likely to die in the hospital,²⁰ which is often seen as a marker of poor-quality EOL care. It may reflect the geography and limited resources in rural New Mexico. However, some Navajo people believe that if a person dies in a home, the home must be abandoned.³⁶ It is possible that the “best” location for death in some populations is not known and may not conform with quality metrics or standards of practice in western medicine. Colclough and Brown suggest that in their study population, the cultural ideal for EOL care is that AI patients would remain in their communities, engaged in AI culture and spiritual practices,³⁵ while families interviewed by Kelly et al.²⁹ gave conflicting reports of patients' preferences for place of death. The Helping Hands Program in Alaska was developed to facilitate palliative and EOL care in rural communities so that more patients could die in their communities, rather than in regional medical centers hundreds of miles from patients' homes. Once started, the program significantly increased the percentage of home deaths for enrolled patients.²⁸ Clearly, a one-size-fits-all approach is neither possible nor desirable. Each community, and in some cases each patient or family, may need to define its own needs, optimal service delivery models, and metrics of success.

Three qualitative studies identified several key themes related to the provision of palliative care in the AI/AN population.^27,29,35 While it is difficult to generalize given that many of the studies include small numbers of patients or family members who belong to a single tribal community, it is notable that several common themes emerge. One key theme was related to barriers to, and facilitators of, effective communication between patients and providers.^27,29 The need for respectful language, and specifically the use of interpreters, was identified as a current barrier and key element of respectful language. In addition to the process by which information is shared, several studies noted the importance of incorporating tribal cultural and spiritual beliefs and practices into palliative and EOL care delivery.^27,29,31,35 A specific example concerns how individual patient autonomy in medical decision making is balanced with how such decisions are made within the context of the patient's relationship to their tribal community.³⁵

The two studies that described development of palliative care-related education provide examples of programs specifically designed to meet the palliative care needs of AI/AN patients through education of either IHS providers or family and community members of AI/AN cancer survivors.^31,32 While patient-specific outcomes are not provided, they do serve as “proof of concept” projects and can provide some guidance for development of similar educational programs.

Lessons learned and recommendations for culturally effective care

Given the limitations of the data available, it is important to be cautious when interpreting the concepts and “lessons” drawn from the studies highlighted in the current article. Often studies provide an isolated look at a community of people who have been queried about a specific topic. Despite the limitations of the data, we have tried to distill the data in a way that will empower providers to engage in effective bidirectional dialogue and exploration with AI/AN patients, in AI/AN communities. What follows below is a discussion of lessons derived from our review of the available literature, combined with the collective experience of the UNM Palliative Medicine Team, and with input from an AI researcher (E.A.H.) with direct personal and research experience with AI/AN groups across the United States.

Cultural humility, not cultural competence

Many factors affect palliative care provision for AI/AN populations, including geography, language, community and IHS resources, degree of acculturation, cultural practices and norms, and religious and spiritual belief systems. One commonly applied approach for reducing the impact of these factors emphasizes “cultural competence.” The cultural competence framework suggests that providers can “master” a checklist of characteristics associated with a group of people and would therefore be knowledgeable about how that group would behave in a medical context. Using this framework, providers risk acting on stereotypes or assumptions at the cost of personal interactions.

“Cultural humility” is an alternative framework for assessing culturally appropriate care.³⁷ It is a process in which providers constantly engage in self-reflection and lifelong learning so they become “flexible and humble enough to assess anew the cultural dimension of the experiences of each patient,” while striving to understand the context of that person's experience of health and illness.³⁷ The benefit of this approach is that it is context dependent, accommodating the vast cultural differences across the more than 560 AI/AN tribes in the United States.

Respect for and inquisitiveness about AI/AN beliefs and healing practices

Many AI/AN people believe that illness arises from imbalances between physical, spiritual, and emotional realms in a person's life.^27,31,35 Curing illness therefore involves restoration of balance, including physical and spiritual healing.³⁵ Although not universal, understanding this and other potential illness scripts such as belief that disease may be caused by “witching” or payback for certain behaviors³¹ may help clinicians caring for AI/AN patients to provide more culturally sensitive care. We have noted this in our own work with members of some AI/AN tribes who have demonstrated a reluctance or unwillingness to discuss their disease or illness or its consequences in detail. Without an understanding of the interrelationship between the physical and spiritual worlds, such reluctance of an AI/AN person to discuss his or her illness can be misinterpreted as denial or noncompliance and lead to potential conflicts between the patient and treating clinicians. For example, our palliative care service cared for an AI woman who repeatedly refused a left lower extremity amputation, despite the lifesaving potential of the procedure. We discovered that in her tradition, she could not go to the spirit world without her whole body. We were able to negotiate with the surgeon, pathologist, and hospital to ensure that her amputated leg could be returned to her postoperatively so that it could be buried on sacred land until she was ready to make her final journey.

If disease is viewed as a “disturbance in the relationship among self, spiritual forces, community, and environment,”³⁵ restoration of balance may involve allowing for family gatherings and traditional healing or spiritual practices in healthcare facilities. Given the physical constraints in many hospitals, it can be challenging to provide the physical space required by large AI/AN families for ceremonial activities that can include wailing, burning of medicinal plants, drumming, and singing. However, multiple authors^27,29,31,34 suggest that large families must be accommodated, traditional healing ceremonies should be allowed, and families must be allowed to attend to the patient in culturally appropriate ways. These practices may facilitate healing and appropriate transition after death. A major focus of care at the EOL in some communities is centered on preparing the spirit for transition. Transition is an important concept in some AI/AN communities, with the EOL representing a time of spiritual transition²⁷ rather than a final event.

In addition, many AIs/ANs practice dual spiritual traditions, incorporating both traditional beliefs and western religious beliefs, especially Catholicism or other forms of Christianity. At the EOL, this dual spirituality can become a source of comfort or conflict, depending on the individual and family's sense of identity and practice in each domain.^38,39

Additional considerations for EOL care in AI/AN communities

Unfortunately, early and traumatic death is not uncommon among AI/AN peoples.^40,41 As such, dying patients and their families often bring an extensive history of loss to the dying experience. As reported by Grossman in their study of adolescents from the Salish community in the Pacific Northwest, 90% of adolescents had experienced the death of a family member and/or friend due to injury or acute intoxication, while ∼25% had lost a parent due to injury or alcoholism.⁴⁰ An appreciation of this history of repeated loss is important for providers, as it may affect the emotional and psychosocial needs of patients, as well as increase the risk for complicated grief in bereaved family members. Palliative care providers may need to create programs that can address these types of repetitive loss and trauma both among patients and survivors.

Finally, in addition to considering the individual needs of the dying patient and his/her family, one must also consider the location in which the death is expected to occur. For example, for AI/AN patients dying in remote or rural areas, a formal hospice program may not be possible due to an inability to meet formal Medicare hospice regulations (e.g., staffing sufficient for an RN to see a given patient within one hour).²⁸ To adapt to geographical constraints, palliative and EOL care programs may need to incorporate unique service models and staff education. Conversely, when patients from rural communities are sent outside their community for healthcare services, they may also die far from home, from their land, and from their support systems. This creates potential barriers for families who want to be with their loved ones during transitions, in addition to logistical challenges such as how to transport a deceased person's body back to their tribal community after death.

Summary and directions for future work

Few studies provide direct evidence of “best practices” in culturally effective palliative and EOL care for AI/AN populations. Given the large number of tribal nations, it is hard to imagine a standard of care that applies universally. Despite the challenges associated with conducting culturally sensitive research and developing effective palliative care programs for AIs/ANs, the work by Arenella et al.³² provides a useful framework for adapting currently available palliative care education to AI/AN patients. They report on a training module for Education in Palliative and End-of-Life Care for Oncology (EPEC-O) that specifically addressed cultural considerations for AI/AN EOL care. As a result of completing this training, 79% of the participants were able to apply the knowledge obtained during the training in their daily work. Over half of the participants started new palliative care services at their practice sites.

In their work with rural Alaska AI/AN communities, DeCourtney et al. were able to demonstrate a significant increase in the number of patients who died at home as well as an increase in DNR orders and comfort care among people in their AI/AN communities following implementation of a palliative care program, compared to historical controls.²⁸ The success of their program stemmed, in part, from designing a program that combined contemporary palliative care with the traditional ways of an indigenous culture.

To mitigate harm and reduce risk for AI/AN populations, research that considers community-based participatory research (CBPR) and community-engaged research models involving community members from the time of idea conception through project completion and result dissemination is critical. Using focus groups, and involving community health workers, community elders, and traditional healers when possible may improve efforts to develop culturally appropriate palliative care programs. As evidenced by the articles profiled in this review, CBPR and community-engaged research is the gold standard for AI/AN research. We have summarized key clinical and research guidelines identified through this systematic review (Table 2).

Table 2.

Tips and Tools

When caring for an individual patient or family:

1. Avoid assumptions:

a. Treat each patient as an individual, and each situation as unique, but also be aware of cultural practices, spiritual beliefs, and norms in your community.^27,37

b. Using a cultural humility framework encourages active inquiry and frequent reassessment, and may help focus care on the individual.^27,37

2. Communication matters:

a. As with all palliative care communication, ask patients and families to clarify their how they would like to receive information.²⁰

b. Interpreter use: Use formal interpreters rather than family members when possible, and ask if an interpreter is needed even if a patient speaks English.^27,29,42

c. Verbal communication: In indigenous languages, there may not be words that correlate directly to those we use in western medicine to describe diseases, medical processes, or EOL.²⁷

d. Some AI/AN patients do not like to discuss prognosis or negative outcomes directly, and communicating in third person is more appropriate.^20,29

e. Death may not be perceived as the EOL but rather as a natural and expected transition in the life cycle.^27,29,35

f. Spiritual needs can include attention to mainstream western religions as well as traditional indigenous spirituality.^{27–29,31,35,38}

g. Culturally appropriate EOL care may require provision of physical space that can accommodate large extended families and allows for traditional practice.^27,29,31,34

h. Nonverbal communication: Monitor nonverbal cues in conversation, use silence, and listen actively. If possible, explore whether certain body language is appropriate in the AI/AN communities you serve.^20,27

3. Geography matters:

a. Familiarize yourself with resources available in rural communities, at IHS facilities, and on tribal land before recommending specific services.

b. In many AI/AN communities, access to formal hospice programs is limited, so alternatives need to be arranged. EOL care may exist but may not have a western medical (hospice) name.^28,34

c. Decentralized services with central technical support and home health nurse or community health worker visits have been important tools for palliative programs serving AI/AN patients in rural settings.^28,34

d. In very remote and rural regions, telemedicine has provided important support to communities where there is a dearth of trained clinicians.⁴³

When developing a program or service:

1. Partner with AI/AN communities:

a. CBPR and community-engaged research—From the time of conception, the program design must be based upon and connected to the needs and desires of the community, rather than the researchers or providers. Tools to encourage success include meeting with elders and other key community members, and holding focus groups in the impacted community

b. Having cultural brokers who can help align community preferences and program design can improve the chance of success.⁴⁴

c. Successful programs are often those that build upon existing palliative care knowledge (e.g., EPEC-O, Helping Hands) but adapt the content to the particular AI/AN population being served.^28,32

d. A palliative care program that combines contemporary palliative care principles with traditional ways of the indigenous culture is more likely to be accepted and effective (e.g., Helping Hands).^27,28

AI/AN, American Indian and Alaska Native; CBPR, community-based participatory research; EPEC-O, Education in Palliative and End-of-Life Care for Oncology; IHS, Indian Health Service.

Conclusion

Ten studies were included in this review. The majority of the studies used a qualitative design with a variety of outcome measures. The studies examined common themes in Native American populations, program development, and some quantitative data. Those studies that looked at themes in the Native American population reported on barriers to treatment and the importance of culturally sensitive communication. Other studies looked at program development and provider education but did not provide data on effectiveness and outcomes. The majority of the studies described utilization or impact of palliative care and/or hospice services among AI/AN populations and found extremely limited documentation of discussions regarding palliative care or hospice among AI/AN patients and decreased utilization of DNR and DNH orders among AI/AN patients.

Given the limited data available, ample opportunities exist for research with AI/AN communities to design, implement, and assess programs that provide palliative and EOL care to AI/AN patients and families. Research networks and sources of collaboration developed via the National Institute of Nursing Research's Office of End of Life and Palliative Care Research and the Palliative Care Research Group are promising sources for future research. For research and program development to be successful, the people for whom services and projects are designed should be included early and consistently. Collaboration, with bidirectional communication and cultural humility at its core, has the potential to generate new programs and services that can truly benefit AI/AN patients and families who are coping with serious and/or terminal illness.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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