Factors Affecting Willingness to Use Hospice in Racially/Ethnically Diverse Older Men and Women

Abstract

Racial/ethnic minorities tend to underutilize hospice services. Guided by Andersen behavioral health model, the purpose of this study was to explore the predictors of the willingness to use hospice services in racially/ethnically diverse older men and women. Data were drawn from the Survey of Older Floridians: 504 non-Hispanic whites, 360 African Americans, 328 Cuban Americans, and 241 non-Cuban Hispanics. In each group, logistic regression models of the willingness to use hospice were estimated. A greater likelihood of willingness was observed among younger non-Hispanic whites and among African Americans with fewer functional disabilities. In non-Cuban Hispanics, English proficiency increased the willingness by 3.1 times. Findings of the study identified group-specific factors contributing to the willingness to use hospice services and hold implications for tailored intervention programs.

Keywords

willingness to use hospice race/ethnicity older adults end of life hospice care behavioral health model

As a viable option of end-of-life (EOL) care, hospice services provide essential care and services to patients and their family, including medical care, pain management, psychosocial support, and bereavement services.^1,2 Despite the benefits of hospice services, disproportionately fewer racial/ethnic minorities are informed about hospice services and the use of such services.^3

-8 The National Hospice and Palliative Care Organization reports that, among the 1.5 million individuals who used hospice services in 2013, only 8.4% were African Americans and 6.8% were Hispanic/Latinos.

Individuals’ cultural backgrounds and race/ethnicity have been associated with EOL preferences and decisions.^9

-12 A number of studies report lower rates of hospice use among African Americans^13,14 and Hispanic Americans^8,15 compared to non-Hispanic whites. In contrast, both African and Hispanic Americans are more likely to desire intensive care at the EOL than non-Hispanic whites.^6,16 Similarly, Connor et al¹⁷ found that racial/ethnic minorities are less likely to receive hospice referrals and are more likely to die in a hospital. It is important to note that disparities observed between those groups were shown to persist even after controlling for the effects of socioeconomic, health status, and health insurance.^7,13,18

While actual hospice utilization is well documented, little attention has been paid to perceptions of or attitudes toward hospice care that might help to explain disparate uses. The few studies considering perceptions and attitudes tend to be based on relatively small samples that compare either African Americans or Hispanics/Latinos to non-Hispanic whites.^19
-21 In one study of 32 home health service users in New York, Rosenfeld and colleagues²² found that African American clients were less likely to have heard of hospice than white clients. In another comparative study of African Americans and whites, Ludke and Smucker²³ found that African Americans were less likely to consider hospice and were also less likely to report a willingness to reconsider it if recommended by their physician. African Americans who did not have trust in their physicians were less willing to use hospice. In general, the negative perceptions of African Americans about hospice may arise from mistrust of the health care system and misinformation about hospice.^18,24,25

Similarly, research shows that Hispanics/Latinos are less likely to learn about hospice and EOL care services^21,26 and often refuse hospice services offered for terminal diagnosis.¹² Contributing to their lack of knowledge about services may be limited English proficiency, limited access to the health care system, reluctance to talk about death, and cultural values on informal caregiving. All these factors may shape negative attitudes toward hospice in the population.^12,18 Research also suggests that Spanish-speaking Hispanics have lower levels of health literacy than their English-speaking counterparts, which may help to explain underutilization of hospice among Hispanics.^27,28 At the same time, it is important to note that disparities in utilization are not consistent. Although Hispanics generally have lower rates of hospice use than non-Hispanic whites,³ for example, one study with Hispanic and non-Hispanic white patients diagnosed with cancer found similar rates of hospice use and intensive EOL care.²⁹

Despite different patterns of hospice use in racial/ethnic groups, few studies have examined differences across diverse groups. Moreover, in order to address underutilization of hospice services in underserved populations, it is important to understand which factors propel or deter hospice use across different racial/ethnic groups. Considering the paucity of research, the present study explored the factors associated with the likelihood of hospice use in 4 racial/ethnic groups: non-Hispanic whites, African Americans, Cuban Americans, and non-Cuban Hispanics. The separation of Cubans from other Hispanics was based on their geographic concentration in Florida, where the sample of the present study was collected, and more than 70% of the Cuban population in the United States live.³⁰ It is also notable that Cuban Americans present unique demographic characteristics. Compared to other Hispanic groups, Cuban Americans are older, have higher levels of income and education, and a lower mortality rate, and yet they are also more likely to have limited English proficiency.³⁰

Building upon past research suggesting that racial/ethnic minorities are more likely to maintain negative attitudes toward EOL care, the purpose of the present study was to explore the willingness to use hospice and its associated factors in 4 racial/ethnic groups. The behavioral health model proposed by Andersen^31,32 served as a conceptual and analytic guideline. The model, with its predisposing, need, and enabling factors, has been applied to study utilization of various types of health services and attitudes toward such services. With willingness to use hospice as an outcome criterion, the analytic model included predisposing (age, gender, marital status/living arrangement, and education), potential health needs (chronic conditions and functional disability), and enabling (health insurance) factors. For Cuban Americans and non-Cuban Hispanics, English proficiency was added as an enabling factor. We hypothesized that (1) nonwhite samples would be less willing to use hospice than the white sample and (2) there would be differences in factors predicting the willingness to use hospice across the 4 racial/ethnic groups. Uncovering group-specific factors would provide insight to develop tailored interventions designed to increase access to hospice services in diverse populations.

Methods

Sample

Data were drawn from the Survey of Older Floridians, an epidemiologic study designed to examine the distribution of physical and behavioral health problems facing the largest racial/ethnic groups in Florida.^33,34 After pilot testing, data were collected through computer-assisted telephone interviews between 2004 and 2005. At the choice of the participant, interviews were conducted in either Spanish or English. With the exception of the Short Portable Mental Status Questionnaire (SPMSQ), English and Spanish versions of questions and instruments were drawn from either the Established Population for Epidemiologic Studies of the Elderly³⁵ or the National Health and Nutrition Examination Survey.³⁶ For a Spanish sample, we used the validated SPMSQ Spanish version.³⁷ Using a statewide sampling frame complemented by an oversampling of racial/ethnic minorities, the study included a total sample of 1433 respondents: 504 whites, 360 African Americans, 328 Cuban Americans, and 241 non-Cuban Hispanics. Respondents were selected through random-digit dialing, and all received a US$20 gift card to local grocery stores. Eligibility criteria included aged 65 or older and cognitively capable in understanding and answering survey questions. Individuals who had more than 5 errors on the SPMSQ^37,38 were not included in the survey. The response rate for the overall statewide sample was 62%.

Measures

Predisposing factors

Demographic information included age (in years), gender (1 = female, 0 = male), marital status (1 = not married, 0 = married), living arrangement (1 = alone, 0 = others), and educational attainment (1 = >high school, 0 = ≤high school). Due to high correlation between marital status and living arrangement in all racial/ethnic groups (r = >.63, P < .001), a composite variable (1 = not married and living alone, 0 = other) was created and used for analysis.

Potential health needs

Chronic conditions were measured with a checklist that asked respondents whether a doctor had ever told them that they had any of the 9 specific diseases or conditions: heart attack, stroke, high blood pressure, Parkinson disease, respiratory problems, cancer, diabetes, osteoporosis, and arthritis. Positive responses were summed for total counts.

In order to assess functional disability, 8 items adopted from the Activities of Daily Living scale³⁹ and the Instrumental Activities of Daily Living scale⁴⁰ were included. The items consisted of eating, dressing, walking, transferring, bathing, toileting, meal preparation, and taking medications. Participants were asked whether they needed help with each of the activities on a yes/no response format. Total scores ranged from 0 (functional independence on all items) to 8 (functional dependence on all items). Internal consistency for the scale was high for all groups (α = .83 for non-Hispanic whites, .79 for African Americans, .77 Cuban Americans, and .76 non-Cuban Hispanics).

Enabling factors

Whether participants had health insurance coverage was coded “yes” or “no.” For Cuban Americans and non-Cuban Hispanics, English proficiency was asked how well they speak English with 4 response options (very well, pretty well, not too well, and not at all). Using the US Census criteria,⁴¹ those who reported that they spoke English less than “very well” were categorized as a group with limited English Proficiency (1 = English proficiency, 0 = limited English proficiency). Because the question was only asked to those who were interviewed in Spanish, 33 Cuban Americans and 55 non-Cuban Hispanic participants who were interviewed in English were given the higher rating of English proficiency.

Outcome variable

The following statement and question were used to assess willingness to use hospice: “hospice is a program that helps people who are dying by making them feel comfortable and free of pain when they can no longer be cured of their disease. If you needed hospice services, would you use them?” A “yes” response indicated personal willingness to use hospice.

Analytic Strategy

Descriptive information and bivariate correlations were assessed to understand the underlying characteristics of the sample and study variables. Logistic regression models of the willingness to use hospice were run for each racial/ethnic group, with the entry order for predictors guided by Andersen behavioral health model: predisposing (age, female or not, unmarried and living alone or not, and high school and higher or not), potential health needs (chronic conditions and functional disability), and enabling (health insurance or not and English proficiency) factors. English proficiency was added in the samples of Cuban Americans and non-Cuban Americans as a potential enabling factor.

Results

Descriptive Information

Table 1 presents descriptive characteristics of the sample. The average ages of the 4 subsamples were all in the early to mid-70s, and participants from minority groups were significantly younger than non-Hispanic whites. The proportions of women were highest in the African American subsample (73%) and lowest in the Cuban American group (61%). About 42% of the non-Hispanic whites were unmarried and living alone, figures significantly higher than those for Cuban Americans and non-Cuban Hispanics. Educational attainment was higher for non-Hispanic whites compared to other groups. The numbers of chronic conditions were comparable across groups. African American sample was found to have a greater number of functional disabilities than non-Hispanic whites. All members of the non-Hispanic white sample had health insurance coverages; however, a significant proportion of the other groups were uninsured, and Cuban Americans were most likely to lack health insurance (10%). In Hispanic samples, close to half of the non-Cuban American sample were proficient in English, whereas one-third of the Cuban American sample were proficient in English. Finally, a significant difference was observed in willingness to use hospice. Compared to non-Hispanic whites (94%), the other racial/ethnic groups were less willing to use hospice (76-90%).

Table 1.

Sample Characteristics and Group Comparisons.^a

Variable	Mean ± SD or %
Variable	Non-Hispanic whites (n = 504)	African Americans (n = 360)	Cuban Americans (n = 328)	Non-Cuban Hispanics (n = 241)
Predisposing factors
Age	75.0 ± 6.95	73.1^d ± 6.77	73.7^c ± 6.65	72.1^d ± 5.8
Gender (female)	63.0	72.8^c	60.7	64.7
Marital status/living arrangement (unmarried and living alone)	41.9	41.3	28.7^d	26.9^d
Education (≥high school)	57.1	31.2^d	41.7^d	45.9^c
Potential health needs
Chronic conditions	2.14 ± 1.30	2.15 ± 1.25	2.0 ± 1.35	2.01 ± 1.28
Functional disability	0.33 ± 1.11	0.67^c ± 1.41	0.54^b ± 1.16	0.54^b ± 1.10
Enabling factors
Health insurance	100	98.6^c	97.8^c	90.9^c
English proficiency	−	−	30.3	45.3
Willingness to use hospice	94.4	90.1^b	76.4^d	82.5^d

Abbreviation: SD, standard deviation.

^aComparative analysis (t or χ² test) was conducted for the variables available for all groups by comparing each minority group with whites.

^b P < .05.

^c P < .01.

^d P < .001.

Predictors of the Willingness to Use Hospice

Table 2 summarizes the series of logistic regression analyses, conducted for each racial/ethnic group, on the willingness to use hospice. In the non-Hispanic white sample, younger individuals were more willing to use hospice (odds ratio [OR] = 0.93, 95% confidence interval [CI]: 0.87-0.98). No health needs’ variables were shown to be significant, and the OR for health insurance was not estimated because all participants were insured. In the African American sample, no significant role of demographic variables was found, but an increasing number of functional disabilities was associated with an decreasing willingness to use hospice (OR = 0.77, 95% CI: 0.62-0.95). None of the variables were significantly associated with willingness to use hospice services in the Cuban American sample. In the non-Cuban Hispanic sample, the only significant explanatory variable was English proficiency: English proficiency increased the willingness by 3.1 times (95% CI: 1.26-7.58).

Table 2.

Logistic Regression Models of Willingness to Use Hospice.

Predictor	Odds ratio (95% confidence interval)
Predictor	Non-Hispanic whites	African Americans	Cuban Americans	Non-Cuban Hispanics
Predisposing factors
Age	.93^a (0.87, 0.98)	.96 (0.91, 1.02)	.99 (0.94, 1.03)	.97 (0.90, 1.04)
Gender (female)	2.32 (0.92, 5.87)	.80 (0.32, 2.0)	1.29 (0.72, 2.32)	1.08 (0.45, 2.60)
Marital status/living arrangement (unmarried and living alone)	.42 (0.17, 1.02)	.97 (0.44, 2.14)	.93 (0.50, 1.73)	1.52 (0.55, 4.22)
Education (≥high school)	1.43 (0.61, 3.37)	.68 (0.30, 1.53)	.84 (0.44, 1.58)	.98 (0.43, 2.23)
Potential health needs
Chronic conditions	.99 (0.71, 1.39)	.83 (0.61, 1.14)	.87 (0.71, 1.07)	1.44 (0.99, 2.09)
Functional disability	1.05 (0.66, 1.69)	.77^a (0.62, .95)	.84 (0.68, 1.04)	.90 (0.62, 1.30)
Enabling factors
Health insurance	−	1.79 (0.17, 19.12)	1.25 (0.23, 6.71)	0.18 (0.02, 1.50)
English proficiency	−	−	.98 (0.49, 1.96)	3.09^a (1.26, 7.58)

^a P < .05.

Discussion

The present study investigated racial/ethnic differences in willingness to use hospice services among non-Hispanic whites, African Americans, Cuban Americans, and non-Cuban Hispanic older adults. Guided by Andersen behavioral health model,^31,32 the purpose of the study was to find racial/ethnic group-specific barriers/enablers in the willingness to use hospice in a representative sample of diverse racial/ethnic groups.

With respect to willingness to use hospice, individuals from the 3 racial/ethnic minority groups were less likely to use hospice than non-Hispanic whites. Cuban Americans were least willing, followed by non-Cuban Hispanics, and African Americans. This finding may reflect the overall trend of low interest and underuse of hospice services by racial/ethnic minorities.^12,23,42 Considering that racial/ethnic minorities are not as well informed about hospice care and services as are their white counterparts,¹⁶ providing educational opportunities for underserved populations may increase their interest and likelihood of using hospice services. The contents of such educational intervention should contain components that are related to cultural concern of EOL issue. Cultural beliefs, preferences, and values may facilitate health-related decisions, especially EOL care options. An important cultural barrier to overcome in any educational effort may be distrust,^18,24,25 on the part of racial/ethnic minorities, of any service predicated on a decision not to seek aggressive health interventions, or to agree to organ donation after death.^43
-45 With attention to such issues, education and advocacy related to hospice care services may increase accessibility to those services among racial/ethnic groups.

As hypothesized, results of the study support the idea that the willingness of different racial/ethnic groups to use hospice may be influenced by different sets of factors. Of the predisposing variables, age was significantly related to willingness to use hospice among non-Hispanic whites: Those who were younger were more willing to use hospice. Although some evidence suggests that younger people are generally more open to receive hospice care,^46
-48 further speculations are needed on that age mattered only for the white group.

Among the needs’ variables, more impaired levels of functional ability were associated with less willingness to use hospice in African Americans. A possible explanation is that individuals who currently have functional disabilities may have lived with the condition for a while, which may desensitize them to consider using hospice services. Although the relationship was statistically significant only for African Americans, it is interesting to note that similar trend was observed in Cuban Americans and non-Cuban Hispanics. Unlike medical conditions often needing aggressive care, limitations in physical functions tend to be both gradual and progressive and may not alert these older adults to plan for hospice care.^6,7,11

Notably, English proficiency was positively associated with willingness of hospice use in non-Cuban Hispanics. One implication of this finding is that greater English proficiency is linked to greater accessibility to resource information and greater acceptance of the services. Individuals with English proficiency may be more likely to obtain information about hospice care and services and more likely to use such services than those with limited English proficiency.^12,26 The finding that English proficiency was mattered only for non-Cuban Hispanics may be explained by Cuban Americans’ geographic concentration. The majority (96%) of Cubans in the sample came from the Miami-Dade County, an area with a density of Cuban population that parts are frequently referred to as “Little Havana.”^30,49 Due to the unique geographic location and access to information and services in their native language, English proficiency may not be essential in obtaining information and services for Cuban Americans residing in this ethnic enclave. On the other hand, the significance of English proficiency for non-Cuban Hispanics suggests that language proficiency may connect Spanish-speaking older adults with more opportunities for services including hospice care, especially in areas with less ethnic concentrations.^12,27,28

The issues of English proficiency and possible distrust toward the health care system call for a need for hospice to provide culturally competent care addressing organizational barriers to cultural sensitivity. In providing hospice care to Hispanics, it becomes important to provide Spanish-speaking staff who not only speak the language but also understand the cultural values and beliefs.^50
-52 Having the health care professionals and staff of the same ethnic background in the hospice setting would also help alleviate mistrust experienced by racial/ethnic minorities, especially African Americans, toward the health care system,^18,24,25 and facilitate working with the preferences expressed by racial/ethnic groups.⁵³ For example, barriers to preparing for EOL care expressed by African Americans and Hispanics may be openly discussed in culturally competent care setting.^53
-55

Some limitations to the present study should be noted. The study sample was drawn from Florida residents only, which limits generalizability of findings to other locations in the United States. Also, the data lacked information on important factors that are conceptually meaningful in diverse cultural groups. Such missing information includes cultural and religious beliefs, misconceptions about hospice believed by cultural groups, lack of diversity among hospice staff, distrust of the health care system let alone information on social factors, and acculturation levels. Future research should consider other types of needs and enabling variables and employ multi-item scales for measurement. Another limitation of the study is that none of the study variables predicted the likelihood of using hospice services in Cuban Americans. Coupled with the lowest willingness level of the population, future research should identify cultural and individual factors that are linked with hospice and EOL care of Cuban Americans.

Despite of these limitations, this study contributed to identifying factors associated with willingness to use hospice among diverse racial/ethnic groups and highlights that the predictive factors varied across these groups. The findings may be the first step to develop culturally sensitive interventions for underserved populations of hospice services. Future studies should explore cultural barriers or facilitators in using hospice care and other EOL services in diverse groups. In particular, further exploration of predictors of hospice service uses in older Cuban Americans may identify unique cultural factors in this population.

As for practice implications, it is critical for health professionals and health care settings to understand preferences and barriers experienced by diverse racial/ethnic groups. Considering that many racial/ethnic minorities learn about hospice in a hospital and at the point of their diagnosis of terminal illness,¹² earlier education about hospice services and other EOL care options in racial/ethnic communities should be encouraged. Identifying key group-specific barriers such as limited English proficiency among Hispanics/Latinos and mistrust of the health care system and addressing the issues in hospice setting would help offer culturally sensitive services to individuals with diverse cultural backgrounds.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The project was supported by the US Administration on Aging Research (grant 90AM2750; Dr Jennifer Salmon, principal investigator; Dr David A. Chiriboga, coprincipal investigator).

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