Original Article
Organizational Barriers to Cultural Competence in Hospice
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(7) 685-694 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909113520614 ajhpm.sagepub.com
Dona J. Reese, PhD, MSW, LCSW1, and Samira K. Beckwith, MSW, LCSW, FACHE, LHD2
Abstract This national mixed method study with directors of 207 hospices identified major barriers to cultural competence, including (1) lack of funding for additional staff for community outreach or development of culturally competent programs, (2) lack of applications from diverse professionals, and (3) lack of knowledge about diverse cultures and what cultural groups in the community are not being served. Qualitative results indicated that elements of an organizational culture, which create barriers to access included (1) failure to prioritize cultural competence, (2) failure to budget for culturally competent services, and (3) a staff that does not value awareness of cultural differences, is uncomfortable with diversity, and stereotypes diverse individuals. In phase 2, an interactive session with a 100-symposium audience provided strategies to address the barriers. Keywords hospice, cultural competence, community outreach, access to hospice, diversity
Introduction Previous research has indicated that patients from diverse cultural groups are not receiving the same quality or quantity of health care as those from the dominant culture.1-3 The hospice field mirrors the disparities of the health care system as a whole, with only 17.2% of hospice patients representing ethnic or racial minorities, in 2011,4 which is a decrease from 18% in 2001.5 Also, some research has indicated lower satisfaction with hospice care on the part of African American clients as compared to Whites.6-8 Research has identified barriers to hospice access for diverse cultural groups but has tended to focus on cultural differences within these groups, which restrict the utilization of hospice.9,10 Studies that explored institutional barriers to hospice access for diverse clients have identified hospice lack of involvement with the African American community11-13 and a lack of cultural competence within hospice organizations.14-16 Organizational cultural competence in health care describes the ability of systems to provide care to patients with diverse values, beliefs, and behaviors, including tailoring delivery to meet patients’ social, cultural, and linguistic needs.17 Models of organizational cultural competence include maximizing diversity, conducting community assessments, collecting community and patient feedback, and information about patient preferences, developing quality measures for diverse patient populations, ensuring culturally and linguistically appropriate health education materials and health promotion and disease prevention interventions.17 Capitman and colleagues’ Assessment Handbook guides the exploration of 6 domains: mission,
governance and administration, personnel practices and staffing patterns, service offerings and caregiving approaches, targeting, and marketing and outreach.18 Despite the development of models of culturally competent hospice care, research indicates that these have not been generally adopted by hospices.19 Kemp20 has criticized hospice organizations for not making efforts toward community outreach. Interviews of hospice and palliative care program directors in 1 southeastern state indicated that directors overestimated how well programs in general are doing in meeting the needs of diverse groups. Those directors who were less interested in cultural competence training for their staff and volunteers had recruited fewer diverse volunteers into their programs. As a result, the lack of diverse staff or volunteers predicted a smaller diverse patient population. Some efforts were underway to develop cultural competence and provide culturally competent care within the state, but some directors reported no efforts in this direction.15 This study revealed the important role of the hospice director in creating a culture that is culturally competent and encourages access for diverse cultural groups. 1 2
School of Social Work, Southern Illinois University, Carbondale, IL, USA Hope HealthCare Services, Fort Myers, FL, USA
Corresponding Author: Dona J. Reese, PhD, MSW, School of Social Work, Southern Illinois University, Quigley Hall, Room 2-C, Mail Code 4329, 875 South Normal Avenue, Carbondale, IL 62901, USA. Email: [email protected]
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686 Research into reasons for the failure of hospices to respond to calls to increase access for diverse cultural groups through implementation of culturally competent services has revealed that the major organizational barrier is a claimed lack of funding.15 Additional organizational barriers include lack of diversity of health care staff,15,21,22 ineffectual outreach to the community,23 culturally insensitive policies,14 a lack of knowledge about diversity issues,15 as well as policies such as the requirement for a Do-Not-Resuscitate Order.14 In the absence of awareness of one’s own paradigm and familiarity with alternative paradigms, it is likely that hospice services and policies will reflect the culture of the staff of the program.24 In most cases, this means that hospice services as well as the communication between professionals and clients will reflect the traditional paradigm of the dominant culture.24 A lack of knowledge of other cultures may lead to policies, practice methods, and communication styles that assume clients hold the same values, beliefs, and customs as the traditional mainstream culture. Recommendations to patients may not include all options or may not honor patient values.25 When confronted with a different worldview, one may react with surprise and a negative response. Staff communication in this case can cause offense. An organizational culture may develop, which creates barriers to access and utilization. In such an organizational culture, cultural competence is not a priority, staff members don’t believe awareness of cultural differences is important, and staff may stereotype diverse individuals and feel uncomfortable with diversity. Lack of cultural and linguistic competence on the part of health care professionals may, in fact, serve to further oppress culturally diverse clients that have already faced biased behavior within the larger society.26 In addition to cultural incompetence due to lack of conscious planning for appropriate training and services, there is evidence that racism in the health care system affects utilization and access to appropriate services.27-29 Racism may exist unconsciously,30 in which discomfort with diversity translates itself into a negative bias with hesitance to serve diverse patients or hire diverse staff. The result is a lack of access to or underutilization of hospice services by diverse cultural groups.26 Evidence exists that among diverse terminally ill patients, those who did utilize hospice were more satisfied with their care than those with other types of care at the end of life.31 Thus, it is important to facilitate this access and utilization of care. National Hospice and Palliative Care Organization (NHPCO) has attempted to address this problem, by publishing guidelines on development of a continuing task force, outreach activities, and staff diversity training,32 and creating a full-time staff position focused on cultural competence and diversity. This staff member developed the Access and Diversity Advisory Council that worked to develop the Toolkit on Access and Diversity made available to hospice providers in 2007.33 The latest Medicare Conditions of Participation for hospices include a groundbreaking requirement for hospices to demonstrate efforts toward cultural competence. However, hospices
Table 1. Characteristics of Participating Organizations: Valid Percentages.a Organization includes a Home hospice program Inpatient hospice Palliative care program Freestanding hospice Home health agency based Hospital based Single site Multiple locations Owned by corporation
Geographical area 87.0% 27.5% 30.0% 39.6% 25.6% 29.5% 33.8% 25.6% 16.9%
Rural Urban Suburban Northeast Southeast Midwest Southwest West coast
70.5% 44.9% 33.8% 15.5% 15.5% 28.5% 7.2% 9.7%
a
More than 1 answer was selected; thus percentages add up to more than 100%.
may not have the skills or knowledge of how to address organizational barriers or engage in such efforts in a way that succeeds in increasing access and utilization for diverse groups. Thus, there is a continued need to identify the existing barriers to cultural competence in hospice and strategies to address them. The purpose of this study was to build on the previous statewide study with a national study of organizational barriers to cultural competence. We hoped to further identify organizational barriers to cultural competence and seek input on strategies to address them. Little information exists on this topic; if these issues are clarified, we can make better progress toward increasing access and utilization of hospice for diverse cultural groups. Along with collecting information about diversity in the hospice, we asked directors to rate the impact of organizational barriers to cultural competence. We also tested 2 hypotheses: 1. 2.
Diversity of the hospice administrator predicts the diversity of the staff, volunteers, and patients. Diversity of staff and volunteers predicts the diversity of patients.
Methods This mixed methods study was conducted in 2 phases. In phase 1, a national Web-based survey with 207 hospice directors explored organizational barriers to development of culturally competent programs. Qualitative questions were included in the questionnaire in order to collect more in-depth and unexpected information about our topic. In phase 2, an interactive session with a 100-symposium audience provided additional qualitative data on barriers, solutions, and strategies to address the barriers.
Phase 1 Sample and procedures. National Hospice and Palliative Care Organization sent an e-mail message to all member hospices nationally, inviting them to participate in an online survey. Our
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Table 2. Organizational Barriers to Cultural Competence in Hospice, in Order From Highest to Lowest Mean Rating.a Mean rating, SD
Barrier Lack of funding for additional staff for community outreach Lack of applications from bilingual professionals Lack of funding for additional staff for development of culturally competent services Some staff lack knowledge about diverse cultures Some staff are not aware of what cultural groups in their community are not being served Some staff do not realize that models of culturally competent services have been developed Hospices do not have funding for culturally appropriate materials Some staff aren’t aware of the lack of access of culturally diverse groups to hospice care Some staff are uncomfortable serving those from diverse cultural groups who do not agree with hospice philosophy Some staff do not realize that culturally appropriate materials are needed Hospices do not have funding for cultural competence training Lack of funding to hire interpreters for a variety of languages The geographic location of hospices creates barriers to access Some staff are unable to locate the information they need Some staff have not received cultural diversity training Lack of funding to obtain materials in languages other than English Interpreters are not available Hospices operate within broader provider systems that limit funding that would further cultural and linguistic services Some staff are uncomfortable including nontraditional forms of treatment, that may be requested by clients, into treatment plans Cultural competence training is not a priority for some staff Community outreach is not a priority for some staff Some staff tend to stereotype individuals from diverse cultural groups Hospices operate within broader provider systems that limit staff activities that would further cultural and linguistic services Culturally competent care is not a priority for some staff CEOs who attempt to implement cultural competence models face lack of cooperation from some of their staff Hospices do not have funding to accept clients who do not have health insurance Some staff are uncomfortable with those from diverse cultures Some staff do not always use available professional interpreters CEOs who attempt to implement cultural competence models face lack of cooperation from their broader provider system Some staff are uncomfortable with gay and lesbian clients Services to diverse cultural groups are not financially feasible Some staff tend to hire those from their own culture Some staff tend to seek out patients from their own culture
3.08, 3.07, 2.94, 2.60, 2.48, 2.39, 2.36, 2.36, 2.33, 2.32, 2.31, 2.23, 2.23, 2.23, 2.20, 2.19, 2.14, 2.11, 2.11,
1.20 1.38 1.20 0.81 0.92 0.98 1.08 0.89 0.93 0.87 1.15 1.26 1.08 0.87 1.01 1.05 1.09 1.02 0.70
2.10, 2.09, 2.09, 2.02, 1.94, 1.91, 1.90, 1.87, 1.85, 1.84, 1.75, 1.67, 1.59, 1.58,
0.86 0.91 0.74 0.92 0.89 0.84 1.11 0.66 0.91 0.88 0.68 0.86 0.76 0.75
Abbreviations: SD, standard deviation; CEO, chief executive officer. a 1 ¼ Never influences; 2 ¼ Hardly ever influences; 3 ¼ Influences half the time; 4 ¼ Influences a lot; 5 ¼ Always influences.
sample included 207 hospices, for a response rate of 12%. Respondents to the Web survey were 32% hospice chief executive officers (CEOs), 37.9% administrators, 12.3% clinical managers, 2.0% nurses, 2.5% social workers, and 13.3% other positions who primarily identified their professional discipline as management (63.3%) and/or nursing (65.2%). The majority of respondents were female (84%), with a median age of 51 years. Our sample included a wide variety of types of programs, geographical locations, size, and diversity of the hospice. The mean patient census was 89.95 (standard deviation [SD] ¼ 137.63). The minimum census was 0, and the maximum was 933. Some very large hospices, and some with great diversity, tended to skew the means; thus, we used medians in much of our analysis. Characteristics of the hospices are shown in Table 1. Measures. Organizational barriers to cultural competence were measured by a scale developed by Dona J. Reese, the
Organizational Barriers to Cultural Competence Scale (see Table 2; Cronbach a ¼ .95), based on the results of the first author’s (D.J.R.) previous studies mentioned earlier. This scale listed organizational barriers to cultural competence and asked respondents to indicate on a 5-point Likert-type scale how much each barrier influences hospice and palliative care organizations: ‘‘The following statements describe needs and barriers that may prevent organizations from implementing cultural and linguistic competence strategies. Based on your experience, please indicate how much each barrier influences hospice organizations by checking the best answer.’’ Respondents were not asked whether each barrier influenced their own hospice specifically, because of a concern that such a question would have been threatening. Possible responses included never influences (scored 1), hardly ever influences (2), influences half the time (3), influences a lot (4), and always influences (5). The scale has not yet been tested for validity.
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Table 3. Racial and Ethnic Characteristics of Staff, Volunteers, and Patients: Median Percentages.
Staff Volunteers Patients
White (not Hispanic)
Latino(a)
African American
Asian
Other race or ethnicity
Speak Spanish
Speak language other than English or Spanish
94.0% 96.5% 92.0%
0.0% 1.0% 1.0%
2.0% 1.0% 4.0%
0.0% 0.0% 0.0%
0.0% 0.0% 0.0%
1.0% 1.0% 1.0%
0.04% 0.10% 0.10%
Table 4. Results of Testing of Hypotheses. Hypothesis
Variables tested
ANOVA, Pearson r, and significance level
Diversity of the hospice administrator predicts the diversity of the staff, volunteers, and patients
Race/ethnicity of administrator, and percentage of white staff
F ¼ 2.97, df ¼ 4, Sig ¼ .02 White administrators had the highest mean percentage of white staff (mean ¼ 88.31, SD ¼ 16.17)a
Race/ethnicity of administrator, and percentage of African American staff
F ¼ 4.23, df ¼ 4, Sig ¼ .003 African American administrators had the highest mean percentage of African American staff (mean ¼ 36.67, SD ¼ 16.50)a ns
Diversity of staff and volunteers Diversity of staff and diversity of patients predicts the diversity of patients Diversity of volunteers and diversity of patients
r ¼ .61, Sig ¼ .000
Abbreviations: Sig, significance; SD, standard deviation; ns, not significant; ANOVA, analysis of variance. a The mean was not used to represent the average, because it was skewed due to some hospices with very high diversity. Median percentages, presented in Table 3, were more appropriate representations of the average diversity in hospices.
In addition, information was sought about the diversity of staff, volunteers, and patients of the specific hospice or palliative care program. Data were collected about the professional discipline, position, race, and gender of the person completing the survey, type of program, whether rural, urban, or suburban, and census of the program. Qualitative questions were also included to explore additional barriers and inquire about solutions. These included the following: ‘‘Please note any additional barriers that prevent hospices from implementing culturally competent services,’’ and ‘‘What do you suggest as solutions for overcoming these barriers?’’
Phase 2 Sample, procedures, and measures. The sample for phase 2 of the project included all members of the audience at an NHPCO Access and Diversity Conference presentation of the phase 1 results.34 The audience consisted of a racially diverse group of approximately 100 hospice practitioners, administrators, and researchers of a variety of professional disciplines. After this presentation, D.J.R. conducted an interactive session with the audience, asking qualitative questions to seek feedback on the major barriers and solutions identified in phase 1, and on our proposed strategy to address the barriers. The session was approximately 1½ hour in length. D.J.R. took notes manually and then analyzed the notes manually, identifying major themes and subthemes in the data.
Results Quantitative Analysis Phase 1 Diversity. Results indicated that hospice staff, volunteers, and patients were almost entirely white (Median percentage: staff—94%, volunteers—96%, and patients—92%). Only 1% (median percentage) each of the staff, volunteers, and patients spoke Spanish. Median percentages were used since means were skewed, due to participation of a few hospices with high diversity. See Table 3 for other racial and ethnic characteristics of the staff, volunteers, and patients. Barriers to cultural competence. The major barriers (influences hospices at least half the time) in the opinion of respondents included lack of funding for additional staff for community outreach, lack of applications from bilingual professionals, lack of funding for additional staff for development of culturally competent services, some staff lack knowledge about diverse cultures, and some staff are not aware of what cultural groups in their community are not being served. Means and SDs for all barriers on the scale are given in Table 2. Hypothesis testing. Results of testing of the hypotheses are shown in Table 4. Hypotheses 1 and 2 predicted relationships between aspects of diversity in the hospices: 1.
Diversity of the hospice administrator predicts the diversity of the staff, volunteers, and patients. Analysis
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of variance testing showed this hypothesis to be partially upheld; the race/ethnicity of the administrator predicted the race/ethnicity of the staff. White administrators had the highest mean percentage of white staff (F ¼ 2.97, df ¼ 4, significance [Sig] ¼ .02; mean ¼ 88.31, SD ¼ 16.17), and African American administrators had the highest mean % of African American staff (F ¼ 4.23, df ¼ 4, Sig ¼ .003; mean ¼ 36.67, SD ¼ 16.50; see Table 4). Thus, results indicated that the race/ethnicity of the administrator was related to the race/ethnicity of the staff, rather than promoting a truly diverse staff. Means should not be interpreted to represent the average; means were skewed and thus the median percentage is a better representation of the average, as shown in Table 3. 2. Diversity of staff and volunteers predicts the diversity of patients. This hypothesis was tested with Pearson correlation and was partially upheld: diversity of volunteers predicted diversity of patients (r ¼ .61, Sig ¼ .000), but diversity of staff was not related to diversity of patients. For all of the tests used to test hypotheses, assumptions were upheld, with the exception of the assumption of normality of frequency distributions. The frequency distribution for race/ ethnicity variables was skewed; these variables were always overwhelmingly white. Thus, the results should be considered with caution. We argue though that these results are important and should be reported. Further testing should explore these questions. Phase 2. There was no quantitative analysis conducted in phase 2 of the study.
Qualitative Analysis Phase 1 Additional barriers. Major themes developed from the data obtained from the question about additional barriers that prevent hospices from implementing culturally competent services included organizational issues, community characteristics, larger health care system issues, issues within diverse populations, and organizational strengths. These will be reported in more detail subsequently. Organizational issues included a lack of diverse or bilingual applicants. This caused value differences between cultures, resulting in a lack of diverse personnel in key positions. Another organizational issue was a lack of diverse or bilingual volunteers. A third organizational issue was knowledge barriers. In this case, staff were unaware of any barriers or that anyone was underserved. They had an inability to transcend stereotypes to understand what diverse clients and cultural groups really need and want. They had a lack of knowledge of other cultures, including beliefs about death and dying, and how to work within diverse belief systems to provide better awareness through public information sessions. Finally, there was a lack
of knowledge about how to access resources, including written materials and videos for patients. A fourth organizational issue was lack of funding. Participants said there was a difficulty in justifying the expense of training when there is a lack of diversity in the community and a need to allocate most funding for direct patient care. There was a lack of funding for culturally appropriate materials, interpreters, additional staff for community outreach and public education, and for serving patients without insurance (including lack of Medicaid coverage). Another funding issue was a failure to allocate time for planning for development of cultural competence. Another organizational issue was the lack of a focused, concentrated community outreach program. This included lack of community collaboration, lack of referrals, and lack of public information sessions. Part of this problem was the lack of a relationship with diverse communities, including difficulty maintaining contact with key members of diverse communities, lack of minorities in key positions such as outreach to referral sources, competition with nonhospice organizations that market themselves in diverse communities, and diverse communities’ lack of interest in listening to ‘‘another do-gooder.’’ Organizational culture was a final organizational issue, which included not recognizing or not wanting to recognize cultural differences, staff being unconcerned about this topic where there was a lack of diversity and discomfort with diversity—including hesitation and discomfort in serving diverse groups or working with diverse staff, and discomfort using interpreters if the family can speak some English or serve as an interpreter for the patient. Community characteristics included a lack of diversity in the community. Subthemes under lack of diversity in the community included rural communities that may not be diverse, staff have limited opportunities to interact with other cultural groups, and opportunities for culturally diverse care are rare. Additional community characteristics included geographical barriers to serving diverse communities, and severe poverty acting as a cultural barrier. A larger health care system issue included government regulations that reduce the ability to meet diverse populations’ needs. Also, a lack of university awareness was reported, including a subtheme of failure to recruit diverse students. Issues within diverse populations included mistrust of conventional medicine by certain cultural groups. Subthemes under this included (1) diverse groups feel that if they enroll in hospice, they would not be receiving the best care, or care they are entitled to, or curative care that is available to others, (2) they do not trust strangers coming into their homes, and (3) they have a fear of hospice. Other issues within diverse populations included they may not be willing to admit they are in need of hospice. Also, participants reported the existence of a preference to associate with their own cultural group, including a subtheme of preference to return to their own country. Also, participants reported a lack of understanding of hospice services, with a subtheme of many misconceptions. They said that diverse populations may
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690 consider hospice divergent to their cultural and religious beliefs or thinking, including an aversion to accepting death, and a preference for taking care of their own, which leads to thinking that hospice is not necessary. Organizational strengths included staff diversity, including full-time African American chaplains on staff and bilingual staff. Other strengths included the hiring of interpreters and providing funding for cultural competence training, with a subtheme of arranging for this cultural competence training through their alliance. Other organizational strengths included access to the tools we need when we face a cultural challenge and a diverse patient population. Another organizational strength was community outreach, with the subthemes of taking every opportunity to speak at local churches and functions, and collaborating with the local university to advance hospice in the Native American community. Another organizational strength was the organizational culture, with the subthemes of serving each cultural segment equally, and staff excitement in learning about the culture and providing the best possible care. Finally, an organizational strength was knowledge, with a subtheme of limited diversity in their community, but nevertheless they recognized that there are some underserved patients. Solutions for addressing the barriers. The other qualitative question on the phase 1 survey asked for suggestions for solutions. Major themes developed from the suggested solutions given included organizational recommendations, community outreach, efforts needed on the part of diverse groups, efforts needed on the part of universities, efforts needed on the part of Medicare, and efforts needed on the part of the National Hospice and Palliative Care Organization. The subthemes for these are listed subsequently. Organizational recommendations included increasing the racial and ethnic diversity of the staff. Within this theme, sub-themes were found, including (1) this would address staff discomfort with diversity, (2) efforts should be made to support minority certified nursing assistants in seeking registered nurse degrees, (3) hire minority outreach personnel, and (4) hire African American chaplains. Another organizational recommendation was funding. Subthemes included (1) special funding should be designated for cultural competence, (2) fund outreach staff and educational materials that are readily available to meet the needs of diverse communities, (3) obtaining funding through grants, including grants for those with particularly high barriers, such as rural or low-income communities, (4) applying to Robert Woods Johnson for a grant, (5) creating a foundation, and (6) policy recommendations: government funding, including raising money through taxes, providing an adequate Medicare Hospice Benefit, and end-of-life care coverage, including for those without insurance, use of state and federal funds, and more Medicaid coverage for hospice Another organizational recommendation was cultural competence training, and its subthemes included (1) calling on the local university to provide cultural information and (2) content for training: general information about cultural issues,
additional information for staff working with a particular client or family, information about diverse cultural beliefs about death and dying, and end-of-life care, teach staff to treat everyone equally, hold open nonjudgmental discussions with staff members about personal biases and fears. A fourth organizational recommendation was linguistic competence, including the subthemes of (1) developing multilingual skills in the staff, (2) calling on a university to provide an interpreter, and (3) using telephones to access interpreters. Finally, an organizational recommendation was organizational culture, with the subthemes including (1) management should provide leadership, (2) management should create policies: policy to use interpreters when this is preferred by patients, require cultural competence training, (3) management should address the time constraints in the organization in order to provide culturally competent services, (4) hospices should create an organizational culture that increases access: a high priority on culturally competent care, a value that understanding of cultural differences is the responsibility of the hospice, and staff who are willing to help clients whether they share their beliefs or not, a value of patient self-determination including meeting the patient on his or her own turf, taking your cue from the patient, learning what part of the culture he or she wants to share with you, and meeting their needs their way, and (5) lack of diversity in community may influence organizational culture. Community outreach included a recommendation that the community needs an assessment to determine who is not being served, with a subtheme of finding invisible folks. A second community outreach recommendation was to increase marketing to diverse groups, with the following subthemes: (1) collaborate with diverse community members, including finding leaders of the diverse community, as well as culturally diverse physician practices, to work with hospice marketing staff in reaching out to the people, (2) present information at places that are comfortable to the community, such as speaking engagements in their churches, outreach at places where the people gather socially, and taking every opportunity to speak at local functions, (3) suggest avenues of communication: use media, use TV ads to target certain groups, conduct more activities to integrate people, provide education and languagespecific hospice information at immigration/welcome centers, (4) content of the communication: letting them know what is available in hospice and using culturally diverse images in outreach campaigns, (5) AIDS/HIV outreach, (6) program representatives, volunteers do work, (7) social worker who has passion and outreach/marketing skills to do the work, (8) create partnerships with other organizations that provide services for diverse cultural groups: United Way, Latino organizations and Latino advisory council, Mong organizations, and ministerial alliances, and (9) get administration’s support. A third community outreach recommendation was education within the larger health care system, with a subtheme of outreach education to nursing schools, community resources, and referral sources. Fourth, a community outreach recommendation was open community education about diverse cultures
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related to health care and end-of-life issues. A final community outreach recommendation was to call on the university to help, including the following subthemes: (1) university could provide interpreters and cultural information, (2) hospices collaborate with the university to advance hospice in diverse communities, and (3) students do outreach. Efforts needed on the part of diverse groups included suggestions for the Native American Health Services organization, with the subthemes of (1) developing a hospice philosophy, (2) developing reimbursement for the people they serve, and (3) providing staff that tribal members are comfortable with. Efforts needed on the part of universities included train more nurses and physicians from diverse cultures of the United States, with the subtheme of increasing scholarship funding to attract diverse students to hospice training. Efforts needed on the part of Medicare included paying a premium to those who provide culturally competent care and increased allocations for those serving the uninsured. Finally, efforts needed on the part of the NHPCO included provide information on Web site, with the subthemes of how to obtain (1) materials, (2) resources for cultural competence training, and (3) information about grant opportunities. Another recommendation for NHPCO was grant funding, with the subthemes of (1) providing funding for those with particularly high barriers—rural or low income, (2) providing funding at the state level so it would be available to all hospices, and (3) creating a foundation for funding for cultural competence development. A final recommendation for NHPCO was to provide training, with the subthemes of (1) repeating the audio conference on cultural diversity, (2) providing affordable programs in cultural diversity, and (3) providing more help and materials from a central source. In phase 2 of the study, the audience at a national presentation was asked to contribute suggestions for addressing the major organizational barriers to cultural competence found in phase 1 of the study. They developed suggestions for the problems of lack of funding, lack of applications, lack of knowledge, and organizational culture. Suggestions for problems of lack of funding included hire staff to focus solely on funding, with a subtheme of finding available person who is committed and rewarding that person later. A second suggestion was increased census will increase funding. A third suggestion was funding based on business model, with a subtheme of building business model. Fourth, use outside resources, with the subthemes of bringing in (1) resources, (2) grants, (3) local corporation foundation, and (4) budget when the census increases. Additional suggestions for lack of funding were budgeting for position, internal locus of control, and fund-raising events, which had the subtheme of sport charities. Suggestions for lack of applications included recruitment, with the following subthemes: (1) sponsor diverse students through school with an obligation to work for you, (2) education in local schools, (3) internships with teaching hospitals, (4) headhunter, and (5) ‘‘Reach out!’’ A second suggestion for lack of applications was interpreters. Third, financial
incentives, with the subthemes of hiring bonus and referral bonus. Fourth, assess and use what works. And fifth, design an organizational culture for retainment, with the subthemes of creating an environment conducive to staying, top-level retention, and retention at all levels. Finally, a suggestion for lack of applications was to create culturally diverse advisory committees. Suggestions for lack of knowledge included conducting a community needs assessment to learn who is not being served, calling on the local university to provide cultural information, and reviewing projections from the US Census on group growth. Suggestions for organizational culture included holding an open nonjudgmental discussion with staff about biases and fears, hiring multicultural individuals in leadership roles including an advisory committee and an admissions committee, and publicizing that you have done so. Also, developing understanding of Jewish culture and cultural differences based on the socioeconomic status. Set behavioral goals, conduct long-range planning, include cultural competence in the mission of organization, conduct assessment of progress, and inform public of results. Participants stated the need for NHPCO to support these goals. Finally, they suggested, placing consumers on the board.
Discussion Implications for Literature The findings of this study are consistent with the existing literature about the importance of the role of the director in promoting cultural competence in the hospice. Participants asserted that the director must take leadership in promoting diversity. The major organizational barriers to cultural competence were those over which the director has direct influence: lack of funding for additional staff for community outreach or development of culturally competent programs, lack of applications from bilingual professionals, and lack of knowledge about diverse cultures and what cultural groups in the community are not being served. The identification of these barriers is consistent with the existing knowledge. Qualitative results are also consistent with studies documenting directors’ failure to prioritize cultural competence in their organizations. This is particularly seen in the barrier of lack of funding. The qualitative data provide new in-depth illustrations about some barriers erected by administrators themselves. For example, administrators expressed difficulty in justifying the expense of culturally competent methods, when their priority is on direct patient care. This priority may be based on an orientation toward bringing in income, even if these results reduced cultural competence and reduced quality of services. When D.J.R. presented the barrier of lack of funding to an audience of hospice administrators, 1 member in the audience asked, ‘‘Lack of funding, or lack of budgeting?’’ This remains an important question. Our knowledge about the importance of the diversity of volunteers was supported, as this study again found that
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692 diversity of volunteers is related to diversity of patients in a hospice. A question remains, though, of whether the presence of diverse volunteers helps to increase utilization of hospice by diverse patients or whether serving diverse patients results in more diverse community members volunteering for the hospice. Anecdotal knowledge of D.J.R. suggests that family members of former patients may volunteer for the hospice, after having a positive experience with their family member’s care. Also, existing research indicates that both explanations may be true—there may be a circular relationship between the 2 variables. We know that African American patients may be more likely to enroll if there are African American staff in the hospice. And, at the same time, African American professionals may be more interested in working in a hospice if there are African American patients.12 Further research is needed to increase our understanding of this finding. The new information found is that the racial and ethnic background of the director predicts the diversity of the patient population. Unfortunately, another new piece of information collected is that hospice staff, volunteers, and patients were almost entirely white, and only 1% of staff, volunteers, or patients spoke Spanish.
Implications for Theory The findings of this study also support the theoretical perspective of this study, in which the policies and intervention approaches used in a hospice reflect the culture of the staff. They also support the existence of racism in the hospice culture, in which staff feels discomfort in serving those from a different cultural or racial group or those who have a different perspective about death and dying (which may reflect diverse cultural and religious beliefs).
Limitations of the Study Although we had a large sample of participants (207 hospices) from all parts of the nation and reflecting a variety of types of programs and rural, urban, and suburban areas, we had a higher proportion of rural and midwestern hospices, and we only had a 12% response rate. Thus, our sample cannot necessarily be considered representative of all hospices nationally. Diversity in our nation is greater in areas in which we did not have as great a response. We did have participation from enough highly diverse hospices, however, to skew our frequency distributions on diversity of administrators, staff, volunteers, and patients. This unfortunately made interpretation of our statistical findings difficult. In addition, our questionnaire asked hospice directors to rate the organizational barriers on our scale in terms of how much they affect hospices in general, not their own hospice in particular. This wording of the question reduces our ability to report facts about the nature of barriers in the specific hospices participating in the study and prevents us from reporting on interesting correlations between these barriers, such as a significant
correlation between the total barrier scores and diversity of the patients. Future studies should address these limitations.
Strengths of the Study Despite the lack of generalizability, this study found important new information about the lack of diversity of staff and volunteers and that diversity of the director as well as volunteers is related to the diversity of patients. This study also helped to identify the major barriers that are preventing hospices from adopting models for culturally competent services. Finally, strength of this study is the healthy response from rural hospices, since the fastest growing rural population is that of minorities.
Implications for Hospice Practice, Management, and Policy There was some indication of a lack of knowledge about organizational barriers to cultural competence on the part of some directors, as seen in some contradictions between the quantitative and qualitative data. The barriers on the scale that we developed were also included because of research findings about their importance. Many of these barriers that were also mentioned as major barriers in the qualitative data had the lowest director ratings in the quantitative data. The implication of this finding is the importance of cultural competence training for directors that emphasize these barriers. We recommend that this training be required by the Centers for Medicare and Medicaid Services (CMS), along with cultural competence training for staff. In addition, the CMS requirement to document attempts toward cultural competence should be upgraded to a requirement to document attainment of cultural competence. Finally, results indicate the need for systematic development of university–hospice–community partnerships to address organizational culture and increase cultural competence in hospices. The results of this study also underscore the importance of personal preparation for culturally competent practice. This preparation can occur in cultural competence training for hospice staff. A result of cultural competence training is development of skills in connecting with diverse community groups and individuals, regardless of the differences in worldviews. In addition, results indicate that diversity in administrators and volunteers are important in developing diversity among staff and patients. Finally, many interesting and creative suggestions were made for addressing the organizational barriers to cultural competence.
Conclusion The purpose of this study was to seek hospice directors’ opinions on the extent that organizational barriers to cultural competence are affecting hospice organizations nationally and to seek their suggestions for addressing these barriers. The 5 major barriers, rated by the hospice directors as affecting hospices at least half the time, were lack of funding for additional
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staff for community outreach, lack of applications from bilingual professionals, lack of funding for additional staff for development of culturally competent services, some staff lack knowledge about diverse cultures, and some staff are not aware of what cultural groups in their community are not being served. Directors rated some other barriers fairly lowly, which were expressed as major barriers in the qualitative data, implying a lack of awareness on the part of some directors. The race/ethnicity of the hospice administrator predicted the race/ethnicity of the staff, with white administrators having the highest mean percentage of white staff, and African American administrators having the highest mean percentage of African American staff. Race/ethnicity of volunteers was also related to the diversity of patients. The qualitative results provided many suggestions for addressing the organizational barriers to cultural competence in hospice. Acknowledgment The authors express their gratitude for the funding support received for this study.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the National Hospice and Palliative Care Organization; along with the Social Work Research Center, School of Social Work, University of Arkansas; and by a Summer Research Stipend from the Fulbright College of the University of Arkansas. The first author conducted the study as a National Institutes of Health, Health Disparities Scholar.
References 1. Cort MA.Cultural mistrust and use of hospice care: Challenges and remedies. J Palliat Med. 2004;7(1):63-71. 2. Taxis JC. Attitude, values, and questions of African Americans regarding participation in hospice programs. J Hosp Palliat Nurs. 2006;8(2):77-85. 3. Williams SW, Desai T, Rurka JT, Mutran EJ. Predictors of satisfaction for African-American and White family caregivers of adult home residents. J Appl Gerontol. 2008;27(5):568-587. 4. National Hospice and Palliative Care Organization. NHPCO facts and figures: Hospice care in America. 2012. http://www.nhpco. org/files/public/Statistics_Research/2012_Facts_Figures.pdf. Accessed September 7, 2013. 5. National Hospice and Palliative Care Organization. NHPCO facts and figures: Hospice care in America. 2002. http://www.nhpco. org/files/public/Statistics_Research/2012_Facts_Figures.pdf. Accessed August 5, 2002. 6. Rhodes RL, Teno JM, Connor SR. African American bereaved family members’ perceptions of the quality of hospice care: Lessened disparities, but opportunities to improve remain. J Pain Symptom Manage. 2007;34(5):474-479.
7. Rhodes RL, Xuan L, Halm EA. African American bereaved family members’10. perceptions of hospice quality: Do hospices with high proportions of African Americans do better? J Palliat Med. 2012;15(10):1137-1141. 8. Welch L, Teno J, Mor V. End-of-life care in black and white: race matters for medical care of dying patients and their families. J Am Geriatr Soc. 2005;53(7):1145-1153. 9. Anderson JR, Turner WL. When caregivers are in need of care: African-American caregivers’ preferences for their own later life care. J Aging Stud. 2010;24(1):65-73. 10. Johnson KS, Kuchibhatla M, Tulsky JA. What explains racial differences in the use of advance directives and attitudes toward hospice care? J Geriatri Soc. 2008;56(10):1953-1958. 11. Hospice Association of America (2010). Hospice facts & statistics. http://www.nahc.org/facts/HospiceStats10.pdf. Accessed 2010. 12. Munoz B, Garrett E, Reese D, Roberts M. African American social work students’ views on hospice employment. Paper presented at the Annual Program Meeting, Council on Social Work Education, Washington, D.C. 2012, November. 13. Washington KT. Barriers to Hospice use among African Americans: a systematic review. Health Soc Work. 2008;33(4):267-274. 14. Reese D, Ahern R, Nair S, J O0 Faire , Warren C. Hospice access and utilization by African Americans: addressing cultural and institutional barriers through participatory action research. Soc Work. 1999;44(6):549-559. 15. Reese D, Melton E, Ciaravino K. Programmatic barriers to providing culturally competent end of life care. Am J Hosp Palliat Med. 2004;21(5):357-364. 16. Schim SM, Doorenbos AZ, Borse NN. Cultural competence among hospice nurses. J Hosp Palliat Nurs. 2006;8(5):302-307. 17. Betancourt J, Green A, Carrillo JE. Commonwealth fund. cultural competence in health care: emerging frameworks and practical approaches. 2002. http://www.commonwealthfund.org/Publications/Fund-Reports/2002/Oct/Cultural-Competence-in-HealthCare–Emerging-Frameworks-and-Practical-Approaches.aspx. Accessed September 7, 2013. 18. Capitman J, Hernandez Gallegos G, Yee D, Madzimoyo W. Diversity and the aging network: An assessment handbook. Waltham, Massachusetts: National Aging Resource Center: Long-term Care. Waltham, MA. Brandeis University, The Heller School; 1991. 19. Ahmann E. Developing cultural competence in health care settings. Pediatr Nurs. 2002;28(2):133-138. 20. Kemp C. Culture and the end of life. J Hosp Palliat Nurs. 2001; 3(1):29-33. 21. Crawley LV, Payne R, Bolden J, et al. Palliative and end-of-life care in the African American community. J Am Med Assoc. 2000;284(19):2518-2521. 22. Gonzalez RI, Godden MB, Porter CP. Eliminating racial and ethnic disparity in health care. Am J Nurs. 2000;100(3):56-58. 23. Werth JL Jr., Blevins D, Toussaint KL, Durham MR. The influence of cultural diversity on end-of-life care and decisions. Am Behav Sci. 2002;46(2):204-219. 24. Galambos CM. Moving cultural diversity toward cultural competence in health care. Health Soc Work. 2003;28(1):3-7.
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694 25. Rosner F. The traditionalist Jewish physician and modern biomedical ethical problems. J Med Philos. 1983;8(3):225-241. 26. Sue D. Counseling the culturally different. 3rd ed. New York, NY: John Wiley & Sons; 1999. 27. Bernabei R, Gambassi G, Lapane K. Management of pain in elderly patients with cancer. JAMA. 1998;279(23):1877-1882. 28. Allen K. Medical sociology and Hispanic health. the Hispanic outlook in higher education 2006;16(17):22-23. 29. Smedley BD, Stith AY, Nelson AR. (Eds.). Institute of Medicine, Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. Unequal treatment: Confronting racial and ethnic disparities in health care. Washington, DC: National Academies Press; 2003. 30. Brantley C, Frost D, Pfeffer C, Buccigrossi J, Robinson M. On Matters of Race, Power, and Privilege. Rochester, NY: Wetware, Inc.; 2003.
31. Reese D, Smith M, Butler C, Shrestha S, Erwin D. African American client satisfaction with hospice: a comparison of primary caregiver experiences within and outside of hospice. Am J Hosp Palliat Med. 2013. http://ajh.sagepub.com/content/ early/2013/06/19/1049909113494462.full. Accessed September 7, 2013. 32. National Hospice and Palliative Care Organization. Caring for Our Own With Respect, Dignity and Love the Hospice Way. Alexandria, VA: Author; 1994. 33. National Hospice and Palliative Care Organization. Toolkit for access and diversity. Alexandria, VA: NHPCO Access and Diversity Task Force; 2007. 34. Reese D, Beckwith S. Organizational barriers to cultural competence in hospice. Paper presented at: National Hospice and Palliative Care Association, Opening Doors, Building Bridges: Access and Diversity Conference, St. Louis, MO, August 2005.
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Organizational Barriers to Cultural Competence in Hospice
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(7) 685-694 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909113520614 ajhpm.sagepub.com
Dona J. Reese, PhD, MSW, LCSW1, and Samira K. Beckwith, MSW, LCSW, FACHE, LHD2
Abstract This national mixed method study with directors of 207 hospices identified major barriers to cultural competence, including (1) lack of funding for additional staff for community outreach or development of culturally competent programs, (2) lack of applications from diverse professionals, and (3) lack of knowledge about diverse cultures and what cultural groups in the community are not being served. Qualitative results indicated that elements of an organizational culture, which create barriers to access included (1) failure to prioritize cultural competence, (2) failure to budget for culturally competent services, and (3) a staff that does not value awareness of cultural differences, is uncomfortable with diversity, and stereotypes diverse individuals. In phase 2, an interactive session with a 100-symposium audience provided strategies to address the barriers. Keywords hospice, cultural competence, community outreach, access to hospice, diversity
Introduction Previous research has indicated that patients from diverse cultural groups are not receiving the same quality or quantity of health care as those from the dominant culture.1-3 The hospice field mirrors the disparities of the health care system as a whole, with only 17.2% of hospice patients representing ethnic or racial minorities, in 2011,4 which is a decrease from 18% in 2001.5 Also, some research has indicated lower satisfaction with hospice care on the part of African American clients as compared to Whites.6-8 Research has identified barriers to hospice access for diverse cultural groups but has tended to focus on cultural differences within these groups, which restrict the utilization of hospice.9,10 Studies that explored institutional barriers to hospice access for diverse clients have identified hospice lack of involvement with the African American community11-13 and a lack of cultural competence within hospice organizations.14-16 Organizational cultural competence in health care describes the ability of systems to provide care to patients with diverse values, beliefs, and behaviors, including tailoring delivery to meet patients’ social, cultural, and linguistic needs.17 Models of organizational cultural competence include maximizing diversity, conducting community assessments, collecting community and patient feedback, and information about patient preferences, developing quality measures for diverse patient populations, ensuring culturally and linguistically appropriate health education materials and health promotion and disease prevention interventions.17 Capitman and colleagues’ Assessment Handbook guides the exploration of 6 domains: mission,
governance and administration, personnel practices and staffing patterns, service offerings and caregiving approaches, targeting, and marketing and outreach.18 Despite the development of models of culturally competent hospice care, research indicates that these have not been generally adopted by hospices.19 Kemp20 has criticized hospice organizations for not making efforts toward community outreach. Interviews of hospice and palliative care program directors in 1 southeastern state indicated that directors overestimated how well programs in general are doing in meeting the needs of diverse groups. Those directors who were less interested in cultural competence training for their staff and volunteers had recruited fewer diverse volunteers into their programs. As a result, the lack of diverse staff or volunteers predicted a smaller diverse patient population. Some efforts were underway to develop cultural competence and provide culturally competent care within the state, but some directors reported no efforts in this direction.15 This study revealed the important role of the hospice director in creating a culture that is culturally competent and encourages access for diverse cultural groups. 1 2
School of Social Work, Southern Illinois University, Carbondale, IL, USA Hope HealthCare Services, Fort Myers, FL, USA
Corresponding Author: Dona J. Reese, PhD, MSW, School of Social Work, Southern Illinois University, Quigley Hall, Room 2-C, Mail Code 4329, 875 South Normal Avenue, Carbondale, IL 62901, USA. Email: [email protected]
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686 Research into reasons for the failure of hospices to respond to calls to increase access for diverse cultural groups through implementation of culturally competent services has revealed that the major organizational barrier is a claimed lack of funding.15 Additional organizational barriers include lack of diversity of health care staff,15,21,22 ineffectual outreach to the community,23 culturally insensitive policies,14 a lack of knowledge about diversity issues,15 as well as policies such as the requirement for a Do-Not-Resuscitate Order.14 In the absence of awareness of one’s own paradigm and familiarity with alternative paradigms, it is likely that hospice services and policies will reflect the culture of the staff of the program.24 In most cases, this means that hospice services as well as the communication between professionals and clients will reflect the traditional paradigm of the dominant culture.24 A lack of knowledge of other cultures may lead to policies, practice methods, and communication styles that assume clients hold the same values, beliefs, and customs as the traditional mainstream culture. Recommendations to patients may not include all options or may not honor patient values.25 When confronted with a different worldview, one may react with surprise and a negative response. Staff communication in this case can cause offense. An organizational culture may develop, which creates barriers to access and utilization. In such an organizational culture, cultural competence is not a priority, staff members don’t believe awareness of cultural differences is important, and staff may stereotype diverse individuals and feel uncomfortable with diversity. Lack of cultural and linguistic competence on the part of health care professionals may, in fact, serve to further oppress culturally diverse clients that have already faced biased behavior within the larger society.26 In addition to cultural incompetence due to lack of conscious planning for appropriate training and services, there is evidence that racism in the health care system affects utilization and access to appropriate services.27-29 Racism may exist unconsciously,30 in which discomfort with diversity translates itself into a negative bias with hesitance to serve diverse patients or hire diverse staff. The result is a lack of access to or underutilization of hospice services by diverse cultural groups.26 Evidence exists that among diverse terminally ill patients, those who did utilize hospice were more satisfied with their care than those with other types of care at the end of life.31 Thus, it is important to facilitate this access and utilization of care. National Hospice and Palliative Care Organization (NHPCO) has attempted to address this problem, by publishing guidelines on development of a continuing task force, outreach activities, and staff diversity training,32 and creating a full-time staff position focused on cultural competence and diversity. This staff member developed the Access and Diversity Advisory Council that worked to develop the Toolkit on Access and Diversity made available to hospice providers in 2007.33 The latest Medicare Conditions of Participation for hospices include a groundbreaking requirement for hospices to demonstrate efforts toward cultural competence. However, hospices
Table 1. Characteristics of Participating Organizations: Valid Percentages.a Organization includes a Home hospice program Inpatient hospice Palliative care program Freestanding hospice Home health agency based Hospital based Single site Multiple locations Owned by corporation
Geographical area 87.0% 27.5% 30.0% 39.6% 25.6% 29.5% 33.8% 25.6% 16.9%
Rural Urban Suburban Northeast Southeast Midwest Southwest West coast
70.5% 44.9% 33.8% 15.5% 15.5% 28.5% 7.2% 9.7%
a
More than 1 answer was selected; thus percentages add up to more than 100%.
may not have the skills or knowledge of how to address organizational barriers or engage in such efforts in a way that succeeds in increasing access and utilization for diverse groups. Thus, there is a continued need to identify the existing barriers to cultural competence in hospice and strategies to address them. The purpose of this study was to build on the previous statewide study with a national study of organizational barriers to cultural competence. We hoped to further identify organizational barriers to cultural competence and seek input on strategies to address them. Little information exists on this topic; if these issues are clarified, we can make better progress toward increasing access and utilization of hospice for diverse cultural groups. Along with collecting information about diversity in the hospice, we asked directors to rate the impact of organizational barriers to cultural competence. We also tested 2 hypotheses: 1. 2.
Diversity of the hospice administrator predicts the diversity of the staff, volunteers, and patients. Diversity of staff and volunteers predicts the diversity of patients.
Methods This mixed methods study was conducted in 2 phases. In phase 1, a national Web-based survey with 207 hospice directors explored organizational barriers to development of culturally competent programs. Qualitative questions were included in the questionnaire in order to collect more in-depth and unexpected information about our topic. In phase 2, an interactive session with a 100-symposium audience provided additional qualitative data on barriers, solutions, and strategies to address the barriers.
Phase 1 Sample and procedures. National Hospice and Palliative Care Organization sent an e-mail message to all member hospices nationally, inviting them to participate in an online survey. Our
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Table 2. Organizational Barriers to Cultural Competence in Hospice, in Order From Highest to Lowest Mean Rating.a Mean rating, SD
Barrier Lack of funding for additional staff for community outreach Lack of applications from bilingual professionals Lack of funding for additional staff for development of culturally competent services Some staff lack knowledge about diverse cultures Some staff are not aware of what cultural groups in their community are not being served Some staff do not realize that models of culturally competent services have been developed Hospices do not have funding for culturally appropriate materials Some staff aren’t aware of the lack of access of culturally diverse groups to hospice care Some staff are uncomfortable serving those from diverse cultural groups who do not agree with hospice philosophy Some staff do not realize that culturally appropriate materials are needed Hospices do not have funding for cultural competence training Lack of funding to hire interpreters for a variety of languages The geographic location of hospices creates barriers to access Some staff are unable to locate the information they need Some staff have not received cultural diversity training Lack of funding to obtain materials in languages other than English Interpreters are not available Hospices operate within broader provider systems that limit funding that would further cultural and linguistic services Some staff are uncomfortable including nontraditional forms of treatment, that may be requested by clients, into treatment plans Cultural competence training is not a priority for some staff Community outreach is not a priority for some staff Some staff tend to stereotype individuals from diverse cultural groups Hospices operate within broader provider systems that limit staff activities that would further cultural and linguistic services Culturally competent care is not a priority for some staff CEOs who attempt to implement cultural competence models face lack of cooperation from some of their staff Hospices do not have funding to accept clients who do not have health insurance Some staff are uncomfortable with those from diverse cultures Some staff do not always use available professional interpreters CEOs who attempt to implement cultural competence models face lack of cooperation from their broader provider system Some staff are uncomfortable with gay and lesbian clients Services to diverse cultural groups are not financially feasible Some staff tend to hire those from their own culture Some staff tend to seek out patients from their own culture
3.08, 3.07, 2.94, 2.60, 2.48, 2.39, 2.36, 2.36, 2.33, 2.32, 2.31, 2.23, 2.23, 2.23, 2.20, 2.19, 2.14, 2.11, 2.11,
1.20 1.38 1.20 0.81 0.92 0.98 1.08 0.89 0.93 0.87 1.15 1.26 1.08 0.87 1.01 1.05 1.09 1.02 0.70
2.10, 2.09, 2.09, 2.02, 1.94, 1.91, 1.90, 1.87, 1.85, 1.84, 1.75, 1.67, 1.59, 1.58,
0.86 0.91 0.74 0.92 0.89 0.84 1.11 0.66 0.91 0.88 0.68 0.86 0.76 0.75
Abbreviations: SD, standard deviation; CEO, chief executive officer. a 1 ¼ Never influences; 2 ¼ Hardly ever influences; 3 ¼ Influences half the time; 4 ¼ Influences a lot; 5 ¼ Always influences.
sample included 207 hospices, for a response rate of 12%. Respondents to the Web survey were 32% hospice chief executive officers (CEOs), 37.9% administrators, 12.3% clinical managers, 2.0% nurses, 2.5% social workers, and 13.3% other positions who primarily identified their professional discipline as management (63.3%) and/or nursing (65.2%). The majority of respondents were female (84%), with a median age of 51 years. Our sample included a wide variety of types of programs, geographical locations, size, and diversity of the hospice. The mean patient census was 89.95 (standard deviation [SD] ¼ 137.63). The minimum census was 0, and the maximum was 933. Some very large hospices, and some with great diversity, tended to skew the means; thus, we used medians in much of our analysis. Characteristics of the hospices are shown in Table 1. Measures. Organizational barriers to cultural competence were measured by a scale developed by Dona J. Reese, the
Organizational Barriers to Cultural Competence Scale (see Table 2; Cronbach a ¼ .95), based on the results of the first author’s (D.J.R.) previous studies mentioned earlier. This scale listed organizational barriers to cultural competence and asked respondents to indicate on a 5-point Likert-type scale how much each barrier influences hospice and palliative care organizations: ‘‘The following statements describe needs and barriers that may prevent organizations from implementing cultural and linguistic competence strategies. Based on your experience, please indicate how much each barrier influences hospice organizations by checking the best answer.’’ Respondents were not asked whether each barrier influenced their own hospice specifically, because of a concern that such a question would have been threatening. Possible responses included never influences (scored 1), hardly ever influences (2), influences half the time (3), influences a lot (4), and always influences (5). The scale has not yet been tested for validity.
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Table 3. Racial and Ethnic Characteristics of Staff, Volunteers, and Patients: Median Percentages.
Staff Volunteers Patients
White (not Hispanic)
Latino(a)
African American
Asian
Other race or ethnicity
Speak Spanish
Speak language other than English or Spanish
94.0% 96.5% 92.0%
0.0% 1.0% 1.0%
2.0% 1.0% 4.0%
0.0% 0.0% 0.0%
0.0% 0.0% 0.0%
1.0% 1.0% 1.0%
0.04% 0.10% 0.10%
Table 4. Results of Testing of Hypotheses. Hypothesis
Variables tested
ANOVA, Pearson r, and significance level
Diversity of the hospice administrator predicts the diversity of the staff, volunteers, and patients
Race/ethnicity of administrator, and percentage of white staff
F ¼ 2.97, df ¼ 4, Sig ¼ .02 White administrators had the highest mean percentage of white staff (mean ¼ 88.31, SD ¼ 16.17)a
Race/ethnicity of administrator, and percentage of African American staff
F ¼ 4.23, df ¼ 4, Sig ¼ .003 African American administrators had the highest mean percentage of African American staff (mean ¼ 36.67, SD ¼ 16.50)a ns
Diversity of staff and volunteers Diversity of staff and diversity of patients predicts the diversity of patients Diversity of volunteers and diversity of patients
r ¼ .61, Sig ¼ .000
Abbreviations: Sig, significance; SD, standard deviation; ns, not significant; ANOVA, analysis of variance. a The mean was not used to represent the average, because it was skewed due to some hospices with very high diversity. Median percentages, presented in Table 3, were more appropriate representations of the average diversity in hospices.
In addition, information was sought about the diversity of staff, volunteers, and patients of the specific hospice or palliative care program. Data were collected about the professional discipline, position, race, and gender of the person completing the survey, type of program, whether rural, urban, or suburban, and census of the program. Qualitative questions were also included to explore additional barriers and inquire about solutions. These included the following: ‘‘Please note any additional barriers that prevent hospices from implementing culturally competent services,’’ and ‘‘What do you suggest as solutions for overcoming these barriers?’’
Phase 2 Sample, procedures, and measures. The sample for phase 2 of the project included all members of the audience at an NHPCO Access and Diversity Conference presentation of the phase 1 results.34 The audience consisted of a racially diverse group of approximately 100 hospice practitioners, administrators, and researchers of a variety of professional disciplines. After this presentation, D.J.R. conducted an interactive session with the audience, asking qualitative questions to seek feedback on the major barriers and solutions identified in phase 1, and on our proposed strategy to address the barriers. The session was approximately 1½ hour in length. D.J.R. took notes manually and then analyzed the notes manually, identifying major themes and subthemes in the data.
Results Quantitative Analysis Phase 1 Diversity. Results indicated that hospice staff, volunteers, and patients were almost entirely white (Median percentage: staff—94%, volunteers—96%, and patients—92%). Only 1% (median percentage) each of the staff, volunteers, and patients spoke Spanish. Median percentages were used since means were skewed, due to participation of a few hospices with high diversity. See Table 3 for other racial and ethnic characteristics of the staff, volunteers, and patients. Barriers to cultural competence. The major barriers (influences hospices at least half the time) in the opinion of respondents included lack of funding for additional staff for community outreach, lack of applications from bilingual professionals, lack of funding for additional staff for development of culturally competent services, some staff lack knowledge about diverse cultures, and some staff are not aware of what cultural groups in their community are not being served. Means and SDs for all barriers on the scale are given in Table 2. Hypothesis testing. Results of testing of the hypotheses are shown in Table 4. Hypotheses 1 and 2 predicted relationships between aspects of diversity in the hospices: 1.
Diversity of the hospice administrator predicts the diversity of the staff, volunteers, and patients. Analysis
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of variance testing showed this hypothesis to be partially upheld; the race/ethnicity of the administrator predicted the race/ethnicity of the staff. White administrators had the highest mean percentage of white staff (F ¼ 2.97, df ¼ 4, significance [Sig] ¼ .02; mean ¼ 88.31, SD ¼ 16.17), and African American administrators had the highest mean % of African American staff (F ¼ 4.23, df ¼ 4, Sig ¼ .003; mean ¼ 36.67, SD ¼ 16.50; see Table 4). Thus, results indicated that the race/ethnicity of the administrator was related to the race/ethnicity of the staff, rather than promoting a truly diverse staff. Means should not be interpreted to represent the average; means were skewed and thus the median percentage is a better representation of the average, as shown in Table 3. 2. Diversity of staff and volunteers predicts the diversity of patients. This hypothesis was tested with Pearson correlation and was partially upheld: diversity of volunteers predicted diversity of patients (r ¼ .61, Sig ¼ .000), but diversity of staff was not related to diversity of patients. For all of the tests used to test hypotheses, assumptions were upheld, with the exception of the assumption of normality of frequency distributions. The frequency distribution for race/ ethnicity variables was skewed; these variables were always overwhelmingly white. Thus, the results should be considered with caution. We argue though that these results are important and should be reported. Further testing should explore these questions. Phase 2. There was no quantitative analysis conducted in phase 2 of the study.
Qualitative Analysis Phase 1 Additional barriers. Major themes developed from the data obtained from the question about additional barriers that prevent hospices from implementing culturally competent services included organizational issues, community characteristics, larger health care system issues, issues within diverse populations, and organizational strengths. These will be reported in more detail subsequently. Organizational issues included a lack of diverse or bilingual applicants. This caused value differences between cultures, resulting in a lack of diverse personnel in key positions. Another organizational issue was a lack of diverse or bilingual volunteers. A third organizational issue was knowledge barriers. In this case, staff were unaware of any barriers or that anyone was underserved. They had an inability to transcend stereotypes to understand what diverse clients and cultural groups really need and want. They had a lack of knowledge of other cultures, including beliefs about death and dying, and how to work within diverse belief systems to provide better awareness through public information sessions. Finally, there was a lack
of knowledge about how to access resources, including written materials and videos for patients. A fourth organizational issue was lack of funding. Participants said there was a difficulty in justifying the expense of training when there is a lack of diversity in the community and a need to allocate most funding for direct patient care. There was a lack of funding for culturally appropriate materials, interpreters, additional staff for community outreach and public education, and for serving patients without insurance (including lack of Medicaid coverage). Another funding issue was a failure to allocate time for planning for development of cultural competence. Another organizational issue was the lack of a focused, concentrated community outreach program. This included lack of community collaboration, lack of referrals, and lack of public information sessions. Part of this problem was the lack of a relationship with diverse communities, including difficulty maintaining contact with key members of diverse communities, lack of minorities in key positions such as outreach to referral sources, competition with nonhospice organizations that market themselves in diverse communities, and diverse communities’ lack of interest in listening to ‘‘another do-gooder.’’ Organizational culture was a final organizational issue, which included not recognizing or not wanting to recognize cultural differences, staff being unconcerned about this topic where there was a lack of diversity and discomfort with diversity—including hesitation and discomfort in serving diverse groups or working with diverse staff, and discomfort using interpreters if the family can speak some English or serve as an interpreter for the patient. Community characteristics included a lack of diversity in the community. Subthemes under lack of diversity in the community included rural communities that may not be diverse, staff have limited opportunities to interact with other cultural groups, and opportunities for culturally diverse care are rare. Additional community characteristics included geographical barriers to serving diverse communities, and severe poverty acting as a cultural barrier. A larger health care system issue included government regulations that reduce the ability to meet diverse populations’ needs. Also, a lack of university awareness was reported, including a subtheme of failure to recruit diverse students. Issues within diverse populations included mistrust of conventional medicine by certain cultural groups. Subthemes under this included (1) diverse groups feel that if they enroll in hospice, they would not be receiving the best care, or care they are entitled to, or curative care that is available to others, (2) they do not trust strangers coming into their homes, and (3) they have a fear of hospice. Other issues within diverse populations included they may not be willing to admit they are in need of hospice. Also, participants reported the existence of a preference to associate with their own cultural group, including a subtheme of preference to return to their own country. Also, participants reported a lack of understanding of hospice services, with a subtheme of many misconceptions. They said that diverse populations may
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690 consider hospice divergent to their cultural and religious beliefs or thinking, including an aversion to accepting death, and a preference for taking care of their own, which leads to thinking that hospice is not necessary. Organizational strengths included staff diversity, including full-time African American chaplains on staff and bilingual staff. Other strengths included the hiring of interpreters and providing funding for cultural competence training, with a subtheme of arranging for this cultural competence training through their alliance. Other organizational strengths included access to the tools we need when we face a cultural challenge and a diverse patient population. Another organizational strength was community outreach, with the subthemes of taking every opportunity to speak at local churches and functions, and collaborating with the local university to advance hospice in the Native American community. Another organizational strength was the organizational culture, with the subthemes of serving each cultural segment equally, and staff excitement in learning about the culture and providing the best possible care. Finally, an organizational strength was knowledge, with a subtheme of limited diversity in their community, but nevertheless they recognized that there are some underserved patients. Solutions for addressing the barriers. The other qualitative question on the phase 1 survey asked for suggestions for solutions. Major themes developed from the suggested solutions given included organizational recommendations, community outreach, efforts needed on the part of diverse groups, efforts needed on the part of universities, efforts needed on the part of Medicare, and efforts needed on the part of the National Hospice and Palliative Care Organization. The subthemes for these are listed subsequently. Organizational recommendations included increasing the racial and ethnic diversity of the staff. Within this theme, sub-themes were found, including (1) this would address staff discomfort with diversity, (2) efforts should be made to support minority certified nursing assistants in seeking registered nurse degrees, (3) hire minority outreach personnel, and (4) hire African American chaplains. Another organizational recommendation was funding. Subthemes included (1) special funding should be designated for cultural competence, (2) fund outreach staff and educational materials that are readily available to meet the needs of diverse communities, (3) obtaining funding through grants, including grants for those with particularly high barriers, such as rural or low-income communities, (4) applying to Robert Woods Johnson for a grant, (5) creating a foundation, and (6) policy recommendations: government funding, including raising money through taxes, providing an adequate Medicare Hospice Benefit, and end-of-life care coverage, including for those without insurance, use of state and federal funds, and more Medicaid coverage for hospice Another organizational recommendation was cultural competence training, and its subthemes included (1) calling on the local university to provide cultural information and (2) content for training: general information about cultural issues,
additional information for staff working with a particular client or family, information about diverse cultural beliefs about death and dying, and end-of-life care, teach staff to treat everyone equally, hold open nonjudgmental discussions with staff members about personal biases and fears. A fourth organizational recommendation was linguistic competence, including the subthemes of (1) developing multilingual skills in the staff, (2) calling on a university to provide an interpreter, and (3) using telephones to access interpreters. Finally, an organizational recommendation was organizational culture, with the subthemes including (1) management should provide leadership, (2) management should create policies: policy to use interpreters when this is preferred by patients, require cultural competence training, (3) management should address the time constraints in the organization in order to provide culturally competent services, (4) hospices should create an organizational culture that increases access: a high priority on culturally competent care, a value that understanding of cultural differences is the responsibility of the hospice, and staff who are willing to help clients whether they share their beliefs or not, a value of patient self-determination including meeting the patient on his or her own turf, taking your cue from the patient, learning what part of the culture he or she wants to share with you, and meeting their needs their way, and (5) lack of diversity in community may influence organizational culture. Community outreach included a recommendation that the community needs an assessment to determine who is not being served, with a subtheme of finding invisible folks. A second community outreach recommendation was to increase marketing to diverse groups, with the following subthemes: (1) collaborate with diverse community members, including finding leaders of the diverse community, as well as culturally diverse physician practices, to work with hospice marketing staff in reaching out to the people, (2) present information at places that are comfortable to the community, such as speaking engagements in their churches, outreach at places where the people gather socially, and taking every opportunity to speak at local functions, (3) suggest avenues of communication: use media, use TV ads to target certain groups, conduct more activities to integrate people, provide education and languagespecific hospice information at immigration/welcome centers, (4) content of the communication: letting them know what is available in hospice and using culturally diverse images in outreach campaigns, (5) AIDS/HIV outreach, (6) program representatives, volunteers do work, (7) social worker who has passion and outreach/marketing skills to do the work, (8) create partnerships with other organizations that provide services for diverse cultural groups: United Way, Latino organizations and Latino advisory council, Mong organizations, and ministerial alliances, and (9) get administration’s support. A third community outreach recommendation was education within the larger health care system, with a subtheme of outreach education to nursing schools, community resources, and referral sources. Fourth, a community outreach recommendation was open community education about diverse cultures
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related to health care and end-of-life issues. A final community outreach recommendation was to call on the university to help, including the following subthemes: (1) university could provide interpreters and cultural information, (2) hospices collaborate with the university to advance hospice in diverse communities, and (3) students do outreach. Efforts needed on the part of diverse groups included suggestions for the Native American Health Services organization, with the subthemes of (1) developing a hospice philosophy, (2) developing reimbursement for the people they serve, and (3) providing staff that tribal members are comfortable with. Efforts needed on the part of universities included train more nurses and physicians from diverse cultures of the United States, with the subtheme of increasing scholarship funding to attract diverse students to hospice training. Efforts needed on the part of Medicare included paying a premium to those who provide culturally competent care and increased allocations for those serving the uninsured. Finally, efforts needed on the part of the NHPCO included provide information on Web site, with the subthemes of how to obtain (1) materials, (2) resources for cultural competence training, and (3) information about grant opportunities. Another recommendation for NHPCO was grant funding, with the subthemes of (1) providing funding for those with particularly high barriers—rural or low income, (2) providing funding at the state level so it would be available to all hospices, and (3) creating a foundation for funding for cultural competence development. A final recommendation for NHPCO was to provide training, with the subthemes of (1) repeating the audio conference on cultural diversity, (2) providing affordable programs in cultural diversity, and (3) providing more help and materials from a central source. In phase 2 of the study, the audience at a national presentation was asked to contribute suggestions for addressing the major organizational barriers to cultural competence found in phase 1 of the study. They developed suggestions for the problems of lack of funding, lack of applications, lack of knowledge, and organizational culture. Suggestions for problems of lack of funding included hire staff to focus solely on funding, with a subtheme of finding available person who is committed and rewarding that person later. A second suggestion was increased census will increase funding. A third suggestion was funding based on business model, with a subtheme of building business model. Fourth, use outside resources, with the subthemes of bringing in (1) resources, (2) grants, (3) local corporation foundation, and (4) budget when the census increases. Additional suggestions for lack of funding were budgeting for position, internal locus of control, and fund-raising events, which had the subtheme of sport charities. Suggestions for lack of applications included recruitment, with the following subthemes: (1) sponsor diverse students through school with an obligation to work for you, (2) education in local schools, (3) internships with teaching hospitals, (4) headhunter, and (5) ‘‘Reach out!’’ A second suggestion for lack of applications was interpreters. Third, financial
incentives, with the subthemes of hiring bonus and referral bonus. Fourth, assess and use what works. And fifth, design an organizational culture for retainment, with the subthemes of creating an environment conducive to staying, top-level retention, and retention at all levels. Finally, a suggestion for lack of applications was to create culturally diverse advisory committees. Suggestions for lack of knowledge included conducting a community needs assessment to learn who is not being served, calling on the local university to provide cultural information, and reviewing projections from the US Census on group growth. Suggestions for organizational culture included holding an open nonjudgmental discussion with staff about biases and fears, hiring multicultural individuals in leadership roles including an advisory committee and an admissions committee, and publicizing that you have done so. Also, developing understanding of Jewish culture and cultural differences based on the socioeconomic status. Set behavioral goals, conduct long-range planning, include cultural competence in the mission of organization, conduct assessment of progress, and inform public of results. Participants stated the need for NHPCO to support these goals. Finally, they suggested, placing consumers on the board.
Discussion Implications for Literature The findings of this study are consistent with the existing literature about the importance of the role of the director in promoting cultural competence in the hospice. Participants asserted that the director must take leadership in promoting diversity. The major organizational barriers to cultural competence were those over which the director has direct influence: lack of funding for additional staff for community outreach or development of culturally competent programs, lack of applications from bilingual professionals, and lack of knowledge about diverse cultures and what cultural groups in the community are not being served. The identification of these barriers is consistent with the existing knowledge. Qualitative results are also consistent with studies documenting directors’ failure to prioritize cultural competence in their organizations. This is particularly seen in the barrier of lack of funding. The qualitative data provide new in-depth illustrations about some barriers erected by administrators themselves. For example, administrators expressed difficulty in justifying the expense of culturally competent methods, when their priority is on direct patient care. This priority may be based on an orientation toward bringing in income, even if these results reduced cultural competence and reduced quality of services. When D.J.R. presented the barrier of lack of funding to an audience of hospice administrators, 1 member in the audience asked, ‘‘Lack of funding, or lack of budgeting?’’ This remains an important question. Our knowledge about the importance of the diversity of volunteers was supported, as this study again found that
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692 diversity of volunteers is related to diversity of patients in a hospice. A question remains, though, of whether the presence of diverse volunteers helps to increase utilization of hospice by diverse patients or whether serving diverse patients results in more diverse community members volunteering for the hospice. Anecdotal knowledge of D.J.R. suggests that family members of former patients may volunteer for the hospice, after having a positive experience with their family member’s care. Also, existing research indicates that both explanations may be true—there may be a circular relationship between the 2 variables. We know that African American patients may be more likely to enroll if there are African American staff in the hospice. And, at the same time, African American professionals may be more interested in working in a hospice if there are African American patients.12 Further research is needed to increase our understanding of this finding. The new information found is that the racial and ethnic background of the director predicts the diversity of the patient population. Unfortunately, another new piece of information collected is that hospice staff, volunteers, and patients were almost entirely white, and only 1% of staff, volunteers, or patients spoke Spanish.
Implications for Theory The findings of this study also support the theoretical perspective of this study, in which the policies and intervention approaches used in a hospice reflect the culture of the staff. They also support the existence of racism in the hospice culture, in which staff feels discomfort in serving those from a different cultural or racial group or those who have a different perspective about death and dying (which may reflect diverse cultural and religious beliefs).
Limitations of the Study Although we had a large sample of participants (207 hospices) from all parts of the nation and reflecting a variety of types of programs and rural, urban, and suburban areas, we had a higher proportion of rural and midwestern hospices, and we only had a 12% response rate. Thus, our sample cannot necessarily be considered representative of all hospices nationally. Diversity in our nation is greater in areas in which we did not have as great a response. We did have participation from enough highly diverse hospices, however, to skew our frequency distributions on diversity of administrators, staff, volunteers, and patients. This unfortunately made interpretation of our statistical findings difficult. In addition, our questionnaire asked hospice directors to rate the organizational barriers on our scale in terms of how much they affect hospices in general, not their own hospice in particular. This wording of the question reduces our ability to report facts about the nature of barriers in the specific hospices participating in the study and prevents us from reporting on interesting correlations between these barriers, such as a significant
correlation between the total barrier scores and diversity of the patients. Future studies should address these limitations.
Strengths of the Study Despite the lack of generalizability, this study found important new information about the lack of diversity of staff and volunteers and that diversity of the director as well as volunteers is related to the diversity of patients. This study also helped to identify the major barriers that are preventing hospices from adopting models for culturally competent services. Finally, strength of this study is the healthy response from rural hospices, since the fastest growing rural population is that of minorities.
Implications for Hospice Practice, Management, and Policy There was some indication of a lack of knowledge about organizational barriers to cultural competence on the part of some directors, as seen in some contradictions between the quantitative and qualitative data. The barriers on the scale that we developed were also included because of research findings about their importance. Many of these barriers that were also mentioned as major barriers in the qualitative data had the lowest director ratings in the quantitative data. The implication of this finding is the importance of cultural competence training for directors that emphasize these barriers. We recommend that this training be required by the Centers for Medicare and Medicaid Services (CMS), along with cultural competence training for staff. In addition, the CMS requirement to document attempts toward cultural competence should be upgraded to a requirement to document attainment of cultural competence. Finally, results indicate the need for systematic development of university–hospice–community partnerships to address organizational culture and increase cultural competence in hospices. The results of this study also underscore the importance of personal preparation for culturally competent practice. This preparation can occur in cultural competence training for hospice staff. A result of cultural competence training is development of skills in connecting with diverse community groups and individuals, regardless of the differences in worldviews. In addition, results indicate that diversity in administrators and volunteers are important in developing diversity among staff and patients. Finally, many interesting and creative suggestions were made for addressing the organizational barriers to cultural competence.
Conclusion The purpose of this study was to seek hospice directors’ opinions on the extent that organizational barriers to cultural competence are affecting hospice organizations nationally and to seek their suggestions for addressing these barriers. The 5 major barriers, rated by the hospice directors as affecting hospices at least half the time, were lack of funding for additional
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staff for community outreach, lack of applications from bilingual professionals, lack of funding for additional staff for development of culturally competent services, some staff lack knowledge about diverse cultures, and some staff are not aware of what cultural groups in their community are not being served. Directors rated some other barriers fairly lowly, which were expressed as major barriers in the qualitative data, implying a lack of awareness on the part of some directors. The race/ethnicity of the hospice administrator predicted the race/ethnicity of the staff, with white administrators having the highest mean percentage of white staff, and African American administrators having the highest mean percentage of African American staff. Race/ethnicity of volunteers was also related to the diversity of patients. The qualitative results provided many suggestions for addressing the organizational barriers to cultural competence in hospice. Acknowledgment The authors express their gratitude for the funding support received for this study.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the National Hospice and Palliative Care Organization; along with the Social Work Research Center, School of Social Work, University of Arkansas; and by a Summer Research Stipend from the Fulbright College of the University of Arkansas. The first author conducted the study as a National Institutes of Health, Health Disparities Scholar.
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