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Barriers to hospice use among African Americans: a systematic review.

Approximately 1.3 million dying individuals and their family members received services from a hospice agency in 2006 (National Hospice and Palliative Care Organization [NHPCO], 2007). Hospice providers work to ensure that patients experience a death that is as natural, dignified, and pain-free as possible. A number of services are typically provided to hospice patients, including care from nurses, social workers, chaplains, physicians, and volunteers. Often, hospice involvement enables individuals to die in their own homes with care and support from loved ones (NHPCO, 2006).

Despite the many benefits of hospice, the general public continues to be resistant to end-of-life care for a variety of reasons. It is well documented that the majority of the population, regardless of race or ethnicity, is unfamiliar with hospice (Asch-Goodkin, Caloras, Coloney, Kangas, & Wegryn, 2000; Berg-Klug, Gessert, & Forbes, 2001; Casarett, Crowley, & Hirschman, 2004; Han, Remsburg, McAuley, Keay, & Travis, 2006; Myers, 2002). Similarly, concern about burdening family members with caregiving needs is ubiquitous (McCarthy, Burns, Davis, & Phillips, 2003; Rabow, Hauser, & Adams, 2004; Tang, 2003; Wong, Liu, Szeto, Sham, & Chan, 2004). Personal, cultural, and spiritual values related to end of life are also predominant throughout the population (Clements et al., 2003; Grime, Nelson-Marten & Muchka, 2004; McGrath, 2003; Myers, 2002). At times, these beliefs may be in conflict with hospice services, which are designed to provide comfort care rather than curative treatment. Finally, because accepting hospice care typically means discontinuing or refusing to initiate life-prolonging treatment, individuals may need to re-evaluate the meaning they attach to the concept of hope before transitioning to hospice services. In recent years, considerable research has been conducted related to the meaning of hope as it pertains to the terminally ill population (Fallowfield, Jenkins, & Beveridge, 2002; Groopman, 2004; Parker-Oliver, 2002; Parker et al., 2001).

Existing research has shown that hospice admission rates vary significantly among different racial and ethnic groups. Most studies have found that African Americans use hospice services at a significantly lower rate than do white Americans (Colon & Lyke, 2003; Virnig, Kind, McBean, & Fisher, 2000). Previous research indicates that there is no one specific reason for this anomaly. Rather, a number of factors contribute to African American underuse of hospice services, such as mistrust of the medical profession, religious conflicts, and philosophical differences related to death and dying (Waters, 2001). With an increasing amount of end-of-life research focusing on service use by members of racial and ethnic minority groups, it is beneficial to explore the existing information in a systematic fashion. The research questions for the study are as follows: Which research methods and designs are being used to explore barriers to utilization of hospice care by African Americans? Which obstacles to increased African American participation in hospice have been identified? and Which interventions designed to increase the number of African Americans using hospice care have been tested?

METHOD

For this review of published research we used a systematic process to examine current findings with regard to African American use of hospice care. Publications included in the review were identified using three databases: Cumulative Index to Nursing & Allied Health Literature (CINAHL), Social Services Abstracts, and PsycINFO. Evidence was bruited to studies that were published in peer-reviewed journals in the English language. After being adapted to the prerequisites of each specific database, the search terms "African Americans" and "minorities" were each paired with "hospice" and "palliative care" to locate articles.

From the original search results, conceptual pieces, reviews, editorials, meta-analyses, dissertations, and articles that did not substantially address the research topic of barriers to use of hospice services among African Americans were excluded, as were case studies and research articles with very small sample sizes (N [less than or equal to] 3). For the purposes of this review, conceptual pieces were defined as any publications that did not include empirical investigation of stated research questions. Current evidence was defined as that indexed between January 1,1996 and June 5, 2006. An initial sample of 23 articles was located. Of those, 11 were omitted from analysis because they did not substantially address the research questions. Three were not included because they discussed hospice agency practices (for example, cultural competency training and recruitment) rather than issues related to service recipients. Finally, one article was excluded because it focused on ethnic minority hospice use outside of the United States and, therefore, contained information that might not be applicable to the U.S. health care system. Ultimately, eight studies from six peer-reviewed journals met the inclusion criteria for this review. To avoid limiting the review's sample size further, we opted not to base inclusion decisions on assessments of individual study quality because any article meeting the criteria for inclusion in this review had undergone peer review before publication.

Data were extracted from each article by two members of the research team, both of whom are master's-prepared social workers with expertise in hospice service delivery. Data were compiled using a standard form created specifically for this review. The form required the researchers to document the following information for each article: research methodology and design used, sample size, obstacles to African American participation in hospice care identified in the study, and interventions tested as part of the published research project (if any). Both researchers involved in data extraction independently collected data from the articles before meeting to discuss their findings. Any differences were discussed until agreement between researchers was reached. The data included on the extraction forms were then synthesized and analyzed using a table detailing the above information. A summary of the studies included in this review as they relate to the identification of barriers to African American use of hospice care is presented in Table 1. Publications are listed alphabetically, by first author. To offer a more comprehensive review of the articles, content included in the table was gathered from all sections of the published research articles.

RESULTS

Research Method and Design

The majority of studies in this review (five of eight) used qualitative methods to explore issues related to African American hospice use. With only one exception, the qualitative pieces relied heavily on data gathered from focus group discussions. Born and colleagues (2004) conducted a total of eight focus groups with the goal of assessing knowledge, attitudes, and beliefs of ethnic minority individuals with regard to hospice care. Four of the groups consisted of African Americans; the remaining four consisted of Latino respondents (Born et al., 2004). Other focus group studies included racially homogenous groups as well; however, those groups consisted exclusively of African American respondents (Bullock, McGraw, Blank, & Bradley, 2005; Jackson, Myers Schim, Seely, Grunow, & Baker, 2000; Jenkins, Lapelle, Zapka, & Kurent, 2005). Torke and colleagues (2005) conducted qualitative research using in-depth interviews rather than focus groups. In their study, researchers conducted in-depth interviews with 23 seriously ill hospital patients to learn about their views regarding end-of-life care.

Two studies employed quantitative methods by using secondary data analysis to investigate African Americans' hospice service use. Farnon and Hofmann (1997) completed retrospective chart reviews of hospice patients. Their primary research focus was on factors contributing to late hospice admissions, not issues pertaining to race. However, their results are noteworthy because of the large percentage of African American patients served by the hospice agency they studied. This particular agency enrolled more than four times as many African American patients as the national average at the time. Greiner, Perera, and Ahluwalia (2003) also conducted secondary data analysis. In their study, data from the 1993 National Mortality Followback Survey were used to study hospice service use by ethnic minorities in their last year of life.

Reese and colleagues (1999) used both quantitative and qualitative strategies in their participatory action research into the barriers to hospice use by African Americans. The first phase of their study consisted of in-depth qualitative interviews of six African American pastors. Data from those interviews were then used to establish a hypothesis that African Americans experienced barriers to hospice use to a greater degree than their white counterparts. Input from the pastors was also incorporated into two scales used specifically for the second phase of the project. During the second phase of the study, a sample of 127 respondents completed the two scales. The first scale measured the degree to which barriers to hospice use were experienced by respondents. The second scale measured the compatibility of the respondents' personal values with the hospice philosophy of care.

Obstacles to African American Hospice Service Use

Values in Conflict with Hospice Philosophy. At some point, every article included in the review discussed the perception that traditional African American values are often thought to be in conflict with the hospice philosophy of care. For some study participants, accepting the terminality of one's life meant giving up faith in God's power to heal (Farnon & Hoffman, 1997; Jackson et al., 2000; Jenkins et al., 2005). Bullock and colleagues (2005) explained that many African Americans connect suffering to spirituality and believe that they are obligated to endure pain as part of their religious commitment. Other research indicated that African Americans may believe that hospice services represent an inferior level of health care compared with aggressive life-sustaining treatment (Born et al., 2004; Reese et al., 1999).The research of Torke et al. (2005) painted a more complex picture of African American values regarding death. Although some respondents in their study expressed concerns that stopping curative treatment would mean "giving up," a higher number of individuals said that they would want to die a peaceful death if all treatment options had been exhausted. Some respondents had mixed feelings, simultaneously hoping for a cure while desiring to be allowed to die rather than be sustained by intensive medical interventions.

By conducting a quantitative analysis of hospice use by ethnic minorities, Greiner and colleagues (2003) highlighted the potential importance of cultural values in deciding whether to access hospice care. Overall, they found a negative association between being African American and using hospice services. This negative relationship persisted even when controlling for gender, income, access to health care, and education. More in-depth analysis revealed a significant relationship between access to health care and race with respect to hospice use among older adults; however, this interaction was diminished when income was included as a variable. These findings suggest that, particularly among younger terminally ill adults, factors such as educational background and financial status are less significant than racial background in one's decision to use hospice services. Although the study does not conclusively demonstrate that African American cultural values are the predominant determinant of hospice use, researchers shed considerable light on the importance of race by controlling for other factors that may influence decisions about end-of-life care.

Lack of Awareness of Hospice Services. Researchers who studied minority use of hospice services often stressed the prevalent lack of information about hospice care among African Americans (Born et al., 2004; Jackson et al., 2000; Jenkins et al., 2005; Reese et al., 1999). In their interviews of African American pastors, Reese and colleagues (1999) found that most clergy members were not familiar with hospice care. Respondents indicated that many African Americans turn to their pastors for advice when a family member is terminally ill. It was noted that if pastors were unaware of services, it was highly unlikely that other African Americans would be aware that such care existed.

Findings from other studies were similar. One man stated that, "when you mention hospice to people, they don't know what ... you're talking about" (Born et al., 2004, p. 252). Jenkins et al. (2005) reported that only one of the four respondents in a focus group knew about hospice or home health care services. Jackson and colleagues (2000) also found a lack of awareness of hospice services among African American respondents, including a lack of complete information about hospice-related services among respondents who had previously received care from a hospice agency. For example, one respondent was unaware that social work services were included in the hospice care package. He reported spending weeks trying to obtain help on his own before he learned that a hospice social worker was available to assist him.

Concern about Burdening Family. Many African American respondents stated that concern about burdening family members was a significant factor in the decisions they would make about care at end of life. Respondents worried that their family members would be faced with difficult decisions about their medical care or would incur financial hardship as a result of paying for their health care and funeral services (Bullock et al., 2005). Some stated they would prefer to die in the hospital if receiving in-home services meant that their family members would be overwhelmed (Jackson et al, 2000; Jenkins et al., 2005). In fact, one study found that respondents who had been hospice caregivers in the past and who were fully aware of the demands that caregiving placed on individuals' fives were most likely to report that they did not want family care if they were terminally ill (Born et al., 2004).

Economic Factors. Several studies reported that financial concerns

were a significant barrier to hospice use by African American patients and families. Respondents in the study by Reese et al. (1999) stated that many African Americans did not have health insurance and were therefore unlikely to believe that they could afford hospice services. The importance of health insurance was echoed by those in other studies. Some focus group respondents explained that they believed having a "good" death was only possible if an individual had adequate health insurance coverage, suggesting that suffering was inevitable without medical insurance (Bullock et al., 2005). Some felt that African Americans with lower incomes were less likely than others to use hospice services primarily because they were not likely to obtain health care of any kind because of a lack of insurance or ability to pay for doctor visits and medication (Born et al., 2004). Jenkins et al. (2005) found that respondents feared that uninsured patients would be provided with substandard care during the terminal phase of their illness. They reported that individuals and families without medical insurance should be trained to be assertive with health care providers to ensure that they or their family member receives the highest quality of end-of-life care available.

Mistrust of Health Care System. Six of the eight articles included in the review identified cultural mistrust of the health care system as a substantial barrier to hospice use among African Americans. Mistrust of the health care system can be described as "the belief that healthcare in the United States is driven by powerful economic and societal forces rather than the best interests of the patient" (Born et al., 2004, p. 253). Research data indicate that mistrust of the health care system is prevalent among members of the African American community and influences the decisions they make regarding end-of-life care (Farnon & Hofmann, 1997; Torke et al., 2005). Some African Americans voiced concern that institutional racism may result in ethnic minority patients receiving inferior care or being encouraged to prematurely forgo life-saving treatments (Born et al., 2004; Bullock et al., 2005; Jackson et al., 2000). Others referenced historical events as evidence that the medical community devalues African American lives, recounting the now-infamous Tuskegee study in which African American men were knowingly denied treatment for syphilis to allow researchers to observe the natural course of the disease (Reese et al., 1999).

Expected Lack of Ethnic Minority Hospice Employees. Cultural mistrust of the health care system is likely related, in part, to the lack of African American professionals employed in health care settings. Three studies found that African Americans' concerns that hospice providers would employ a limited number of ethnic minority individuals were believed to deter African Americans from using hospice services. Pastors interviewed in the Reese et al. (1999) study voiced concerns that they anticipated that few, if any, African Americans were employed by local health care providers. The pastors believed that interacting with staff members who shared a common cultural background would relieve some of the concerns of potential hospice patients. Participants in the Jackson et al. (2000) study echoed this sentiment. One man in the study who had been a family member of a hospice patient noted that "they didn't even have a Black preacher to pray for my brother" (p. 70). Although respondents in the Jenkins et al. (2005) study were not reported to have explicitly stated that more African Americans should be employed by hospice agencies, many of their concerns and recommendations would be addressed by increasing the presence of ethnic minority employees among hospice providers. For example, respondents stressed that health care providers should become familiar with communication patterns that African Americans commonly use, such as using metaphors to describe death or showing respect to patients by using "Mister" and "Miss" unless given permission to use first names. Presumably, African American employees would be knowledgeable about such practices. Respondents also indicated that having African Americans involved in providing spiritual support to patients and families would dramatically improve care because religious beliefs are central to the fives of many ethnic minorities.

Intervention Studies

Although research has generated a significant amount of exploratory and descriptive data regarding African American hospice use, very few studies have been conducted to determine which interventions, if any, are effective in decreasing racial disparities in the use of hospice services. None of the articles that met the inclusion criteria for this review empirically tested interventions to address the identified barriers to African American hospice use. Only one article described research that included intervention of any kind. By using a participatory action design and involving community members in numerous aspects of the study, researchers in the Reese et al. (1999) study created social action through their research process. It should be noted, however, that because the effects of this intervention were not systematically measured the researchers could not determine the effect of the intervention.

DISCUSSION

In summary, both qualitative and quantitative methods of inquiry have identified several key factors that contribute to the underuse of hospice services by members of the African American community: personal or cultural values in conflict with hospice philosophy, lack of awareness of hospice services, concern about burdening family, economic factors, mistrust of the health care system, and anticipated lack of ethnic minority employees in hospice agencies. These themes emerged in numerous articles. Each was identified as a barrier in at least three of the studies included in this review. Although existing research has produced very rich, in-depth descriptive data, few studies have attempted to implement interventions designed to address barriers to hospice use by African American patients and families.

Although many key factors contribute to the underuse of hospice services by members of the African American community, the majority of the identified factors are not specific to this particular population. As previously mentioned, a lack of familiarity with hospice services, concerns related to family burden, and personal, cultural, and spiritual issues related to death and dying are pervasive throughout society, regardless of race or ethnicity. Those issues specific to the African American population appear to be their mistrust of the health care system and their expectation that they would be unlikely to encounter ethnic minority hospice employees.

There are numerous limitations to this review. Generalizations are restricted to the identified review criteria. Furthermore, of the original 23 articles, only eight met the inclusion criteria, thus resulting in a small sample size. As a result, the literature reviewed is able to provide only a limited portrait of the factors that affect hospice use by African Americans. The predominant use of focus groups is problematic because of the reactive and investigator effects that may have been present if participants knew they were being observed, along with the possibility of moderator bias (Tashakkori & Teddlie, 2003). Likewise, limited quantitative data may affect the validity, reliability, and generalizability of the research information.

Implications for the Social Work Profession

A number of implications for the social work profession have been identified as a result of the systematic review findings. First, qualitative research has identified numerous reasons for African Americans' reluctance to use hospice services. These reasons are well documented in numerous studies, using both focus groups and in-depth personal interviews. There is little need for additional exploration in this area. Future social work research should include efforts to quantitatively determine whether these themes are statistically significant factors in decisions that African Americans make regarding end-of-life care.

In addition, it is clear that social work intervention studies are sorely needed in this area. Financial resources are often at a premium in hospice agencies (Pietroburgo, 2006) and it is reasonable to conclude that providers would be more likely to invest in measures to increase African American use of hospice care if the measures have been shown to be effective. Therefore, it is critical that social work interventions designed to confront such obstacles are tested. Only through empirical research will it be possible to determine which social work interventions are both effective in increasing African American admissions and feasible for the hospice industry.

At the same time, it cannot be assumed that increasing African American hospice admission rates necessarily reflects an improvement in culturally competent service delivery. It is the responsibility of the health care team to ensure that patients and family members have received and understood complete and accurate information about their treatment options. However, if the hospice philosophy of care simply cannot be reconciled with traditional African American cultural beliefs, health care providers must respect patients' decisions to decline hospice services rather than label the choice to pursue aggressive fife-sustaining treatment as futile or misguided. It is imperative that social workers continually strive to increase their competence related to cultural diversity and to serve as advocates for patients of all cultures and ethnicities.

CONCLUSION

It is important to remember that the realities of dying for members of different racial groups are alike in as many ways as they are different (Waters, 2001). Therefore, research efforts designed to improve the quality of hospice care for any particular demographic group would likely produce positive results for all hospice patients. At the same time, it is important to take into consideration the diversity of values and beliefs that are represented in any patient population. To that end, research has adequately identified obstacles to hospice use among African Americans. Future studies should move beyond exploratory work in this area, focusing on testing interventions that may decrease racial disparities in the hospice industry while celebrating rather than challenging cultural values.

Original manuscript received January 25, 2007

Final revision received June 2, 2008

Accepted July 15, 2008

REFERENCES

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Berg-Klug, M., Gessert, C., & Forbes, S. (2001).The need to revise assumptions about the end of life: Implications for social work practice. Health & Social Work, 26, 38-47.

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Bullock, K., McGraw, S.A., Blank, K., & Bradley, E. H. (2005) .What matters to older African Americans facing end-of-life decisions? A focus group study. Journal of Social Work in End-of-Life & Palliative Care, 1(3), 3-19.

Casarett, D.J., Crowley, R. L., & Hirschman, K. B. (2004). How should clinicians describe hospice to patients and families? American Geriatrics Society, 52, 1923-1928.

Clements, P.T., Vigil, G.J., Manno, M. S., Henry, G. C., Wilks, J., Das, S., Kellywood, R., & Foster, W. (2003). Cultural perspectives of death, grief, and bereavement. Journal of Psychosocial Nursing and Mental Health Services, 41(7), 18-26.

Colon, M., & Lyke, J. (2003). Comparison of hospice use and demographics among European Americans, African Americans, and Latinos. American Journal of Hospice & Palliative Care, 20, 182-190.

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Farnon, C., & Hofmann, M. (1997). Factors contributing to late hospice admission and proposals for change. American Journal of Hospice & Palliative Medicine, 14, 212-218.

Greiner, K. A., Perera, S., & Ahluwaha, J. S. (2003). Hospice usage by minorities in the last year of life: Results from the national mortality followback study. Journal of the American Geriatrics Society, 51, 970-978.

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Jackson, E, Myers Schim, S., Seely, S., Grunow, K., & Baker, J. (2000). Barriers to hospice care for African Americans: Problems and solutions. Journal of Hospice and Palliative Nursing, 2(2), 65-72.

Jenkins, C., Lapelle, N., Zapka, J. G., & Kurent, J. E. (2005). End-of-life care and African Americans: Voices from the community. Journal of Palliative Medicine, 8, 585-592.

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Karla T. Washington, MSW, is a doctoral candidate, and Denise Bickel-Swenson, MSW, is a doctoral candidate, School of Social Work, University of Missouri. Nathan Stephens, MSW,, is director, Gaines/Oldham Black Culture Center, Columbia, MO. Address correspondence to Karla T. Washington, MSW, School of Social Work, University of Missouri, 724 Clark Hall, Columbia, MO 65211; e-mail: washingtonkt@missouri.edu.
Table 1: Barriers to African American Use of Hospice Services

 Values in
 Conflict
 Study with
 Methodology Hospice
Publication and Design Philosophy

Born, Greiner, Sylvia, Qualitative; focus [check]
Butler, & Ahluwalia groups; N = 53
(2004)

Bullock, McGraw, Blank, Qualitative; focus [check]
& Bradley (2005) groups; N = 22

Farnon & Hofmann (1997) Quantitative; secondary [check]
 data analysis; N = 105

Greiner, Perera, & Quantitative; secondary [check]
Ahluwalia (2003) data analysis; N = 11,291

Jackson, Myers Schim, Qualitative; focus [check]
Seely, Grunow, & Baker groups; N = 30
(2000)

Jenkins, Lapelle, Zapka, Qualitative; repeated [check]
& Kurent (2005) focus groups; sample
 size varied

Reese, Ahern, Nair, Mixed methods: [check]
O'Faire, & Warren (1999) Qualitative; interviews;
 N = 6; Quantitative;
 questionnaires; N = 127

Torke, Garas, Sexson, Qualitative; interviews; [check]
& Branch (2005) N = 23

 Lack of Concern
 Awareness about
 of Hospice Burdening Economic
Publication Services Family Factors

Born, Greiner, Sylvia, [check] [check] [check]
Butler, & Ahluwalia
(2004)

Bullock, McGraw, Blank, [check] [check]
& Bradley (2005)

Farnon & Hofmann (1997)

Greiner, Perera, &
Ahluwalia (2003)

Jackson, Myers Schim, [check] [check]
Seely, Grunow, & Baker
(2000)

Jenkins, Lapelle, Zapka, [check] [check] [check]
& Kurent (2005)

Reese, Ahern, Nair, [check] [check]
O'Faire, & Warren (1999)

Torke, Garas, Sexson,
& Branch (2005)

 Mistrust Anticipated
 of Health Lack of
 Care Minority
Publication System Employees

Born, Greiner, Sylvia, [check]
Butler, & Ahluwalia
(2004)

Bullock, McGraw, Blank, [check]
& Bradley (2005)

Farnon & Hofmann (1997) [check]

Greiner, Perera, &
Ahluwalia (2003)

Jackson, Myers Schim, [check] [check]
Seely, Grunow, & Baker
(2000)

Jenkins, Lapelle, Zapka, [check]
& Kurent (2005)

Reese, Ahern, Nair, [check] [check]
O'Faire, & Warren (1999)

Torke, Garas, Sexson, [check]
& Branch (2005)
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Author:Washington, Karla T.; Bickel-Swenson, Denise; Stephens, Nathan
Publication:Health and Social Work
Article Type:Report
Geographic Code:1USA
Date:Nov 1, 2008
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