Hospice and Underutilization by Minorities

Hospice and Underutilization by Minorities

Improving end of life care is an important healthcare concern and improving access to hospice services and utilization is a national prerogative. Socioeconomic, cultural and systemic factors affect hospice enrollment leading to a distinct under utilization of hospice services by the minority communities. Educational interventions to create awareness and remove misconceptions, improved insurance coverage, and effective cultural integration of migrant population are key social factors. Delivering culturally sensitive healthcare is a key to addressing the disparity in hospice utilization. Increasing cultural diversity among the Hospice staff could be a first step in the right direction.

Introduction

Hospice care involves care provision to comfort terminally ill patients in their day-to-day routine with services including - pain management, psychosocial and spiritual counseling, diet management, bereavement counseling for family, etc. Pioneered by Dr. Dame Cicely Saunders in 1967, the Hospice setting focuses on care rather than cure and strives to provide a natural and peaceful end of life care for the dying people. Though popularized in the U.S. with inclusion in the national Medicare program, hospice services remain largely underused. This can be verified by the fact that only 20% -- 25% of the national population of terminally ill people utilize hospice care. [Albert J. Finestone, (2008)] Within the U.S. population, there exists a distinct disparity in the utilization of hospice programs with the minority population being underserved in hospice settings. Studies focusing on the issue have put forth several causes for this racial disparity in hospice utilization including social, economic, cultural factors that act as barriers to enrollment in hospice care. The following literature review serves to highlight these important issues and the inferences drawn could be useful in formulating interventions to reverse the trend.

Literature Review

Jennifer et.al (2007) focused on whether hospice care utilization was influenced by the composition of a particular census area. Data for the study was obtained from the SEER database for people who were diagnosed with terminal cancer (breast, lung, prostate or colorectal cancer) between 1990 and 1999. A total of The results from the study revealed that 46% of the cancer patients utilized hospice services during the last year of their lives. It was also found that the percentage of hospice use in regions with high African-American and Hispanic population was less (35%) compared to the hospice utilization in low minority regions (47%). For instance, almost 43.2% of African-Americans and 47.8% of Hispanics utilized hospice services in low minority regions. Even in regions where there is high African-American and Hispanic population, there was no significant difference in hospice usage among the white population (44.1%). These figures suggest a clear disparity in utilization of hospice services in high minority regions. The study concluded that improving medical infrastructure allocation and removing the misperceptions about hospice care are central to improving the utilization of hospice care among the minority populations. [Jennifer et.al (2007)]

Givens et.al (2010) is one recent research that studied the racial and ethnic differences among heart patients seeking hospice care. The researchers used the Medicare denominator file for 2001 to gather data pertaining to Medicare beneficiaries for the period. The national death index was also consulted to confirm the date of death. A total of 603, 128 beneficiaries fitted the criteria from which the researchers separated 98,258 cases that were diagnosed with heart failure. The study authors also gathered information related to severity of heart failure from the Medicare inpatient files for 2000 which stored data pertaining to the number of emergency visits and the time period of stay in the ICU. Couple of geographic variables for urbanicity and hospice intensity was also included. Among the study population of 98,258, 88.3% were white, 8.5% black, 1.4% Hispanic and 1.8% others. Of the entire study population, only 3.9% used hospice services for the year 2001. Statistical analysis of the data further revealed that after adjusting for DCG scores (that reflect patient morbidity), urbanicity and hospice intensity factors, the hospice utilization rate was lowest for the Hispanics (adjusted odds ratio [OR], 0.49 [95% confidence interval {CI}, 0.37 -- 0.66) compared with Whites. The utilization rate for African-Americans (adjusted OR, 0.59 [95% CI, 0.47 -- 0.73]) and other non-white groups adjusted OR, 0.64 [95% CI, 0.52 -- 0.80]) also remained significantly lower.

In other words, Hispanics were 51% less likely and African-Americans were 41% less likely to use hospice services compared to whites. This study clearly attests to the findings from previous studies claiming under utilization of hospice services by the minority population. Even after adjusting for the two geographic variables in the study, the underutilization of hospice services among the minority population was starkly evident. This clearly indicates the influence of other factors including racial and cultural differences in understanding and accepting palliative care. The study authors concluded that more research into the impact of cultural factors on the utilization of hospice care is urgently required to implement effective interventions to promote hospice use among the minority population. [Givens et.al (2010)]

Another recent national level study by Amber et.al (2009) explored the differences in end of life care preferences among people from different races. This study also gathered extensive information including education level, financial situation, social networks, health status, perceptions about mechanical ventilation, etc. The study population was the national sample of Medicare beneficiaries (aged 65 and above) obtained from the Medicare denominator file for 2003. This study was conducted by a multi-modal approach involving both telephonic and mail-based survey. Only 2,847 subjects of the eligible 4,610 beneficiaries responded to the survey. Of these, non-Hispanic Whites constituted 85%, 4.6% Hispanics, 6.3% blacks and 4.2% belonged to other race. Analysis of the gathered information revealed some distinct facts. More African-Americans (18%) and Hispanics (15%) tended to prefer dying in the hospital compared to Whites (8%). There is also a clear preference between the African-American (28%) and the Hispanic patients (21.2%) in their choice for life prolonging interventions even at the risk of increased side effects compared to the white patients (15%). Also more African-American (24%) and Hispanic patients (22%) preferred the use of Mechanical Ventilation for prolonging life by a week or a month compared to the white patients (13%).

Statistical analysis clearly indicate that black race was an interdependent predictor for greater use of life saving and potentially hurtful interventions [1.9 (1.4 -- 2.6)], MV for 1 week [2.3 (1.6 -- 3.3)] while the Hispanic race was an independent predictor of preference for dying at the hospital [2.2 (1.3 -- 4.0)] and reduced preference [0.5 (0.3 -- 0.7)] for accepting the use of palliative drugs that could shorten life. Overall the study showed that African-Americans (p

Lilian (2008) was a systematic review of studies relating to the disparities in hospice care. The author used medical databases (Cochran, Pubmed, Medline, Psych info, etc.,) for articles published from 1980 to 2006 using appropriate keywords such as 'Hospice Use', 'Hospice utilization', 'racial disparities', 'palliative care' etc. A total of 13 articles published between 1998 and 2006 were finally selected after pruning the articles based on the study criteria. Twelve of these thirteen studies reported disparities in hospice service utilization among the minorities compared to Whites. Among these studies, Ngo-Metzger et.al (2003) is particularly significant as it highlights differences in hospice utilization between Asian-Americans born in America and those who migrated. This study focused on Medicare beneficiaries who died between 1988 and 1998 due to colorectal, breast, lung, prostate, liver and gastric cancers and studied their hospice utilization trend. From a total sample of 184,081 subjects, 5% were Asian-Americans and among this group 45% were foreign born. This retrospective study revealed that hospice utilization was the lowest among foreign-born Asian-Americans with Odds ration foreign-born [OR _0.90; 95% CI: 0.86 -- 0.94]). The study also showed that U.S. born Asian-Americans were also less likely than non-Hispanic whites to use hospice services [odds ratio {OR} _ 0.67; 95% confidence interval {CI}: 0.62 -- 0.73];

Another older but significant study included in the Lilian (2008) review is the research by Cox (1998). This study is important as it focuses on hospice utilization by Persons with AIDS. (PWA). This study analyzed 957 hospice services in the U.S. And Puerto Rico. It was found that PWAs were more likely to be African-Americans (p _ 0.0001) or Hispanics (p _ 0.05). Analysis of the national data also indicated that though African-Americans represented 31% of the AIDS cases in the country they were grossly underrepresented in the hospice services with only 24% of PWAs placed under Hospice care. Similarly, Hispanics who make up 17% of AIDS cases only utilize 10% of hospice care while Non-Hispanic Whites who make up 52% of AIDS cases make up 64% of PWAs placed under hospice care. This review by Lilian clearly proves that there is a clear disparity in the utilization of hospice services by the minority groups. [Lilian, 2008]

Yuri et.al (2010) studied the willingness of older Korean-American people in using Hospice services. Using Andersen's behavioral model factors that either contribute or affect, the willingness to use hospices services were explored. The subjects for the study were chosen from the data collected for the 'Mental Health Literacy Among Korean-American Elders project'. Using the information from the Florida Korean-American Association, the subjects for the study were selected based on the eligibility criteria of age above 60. In all, 675 participants fulfilled the selection criteria and questionnaires composed in Korean language were used to gather information which were categorized into three distinct measures namely 1) predisposing Factors, 2) Potential Health Needs and 3) Enabling factors. Predisposing factors included age, sex, education and marital status. Health needs were assessed using questions relating to chronic conditions such as heart ailments, arthritis, stroke, diabetes, cancer etc. Also using the 'older American resources and Services Questionnaire' the researchers were able to gauge the functional status of the subjects with scores ranging from 0 or no disability to a high 40 implying severe disability. Enabling factors included availability of insurance coverage, awareness about hospice services and degree of acculturation. The '12-item acculturation inventory' was used to assess this. The subjects were asked the following question "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?" [Yuri et.al (2010) ]and they were asked to answer in a yes or no format.

Analysis of the gathered information revealed that 82% of the subjects had medical insurance and that almost 52.8% of the sample had previous knowledge about hospice services. The Acculturation scores were 15.8 ± 7.6 (max of 36). Statistical analysis showed that higher insurance coverage (OR = 0.59, 95% CI = 0.37 -- 0.94), higher acculturation score (OR = 1.07, 95% CI = 1.03 -- 1.10) and previous awareness of hospice services (OR = 4.43, 95% CI = 2.85 -- 6.90) contributed to increased willingness to accept hospice care. Statistical analysis also showed that the age and education were important predisposing factors with the younger (odds ratio (OR) = 0.96, 95% confidence interval (CI) = 0.93 -- 0.98) and those with education above high school level (OR = 1.67, 95% CI = 1.13 -- 2.48) were more willing to use hospice services. Though the present study indicated that more than 73% of the sample expressed their willingness to try hospice services, it is to be noted that this number is still lower compared to 94.4% among the white American population. Another important fact that can be inferred from this study is that though age is an important variable, the introduction of the previous awareness of hospice services measure into the study model significantly reduced the effect of age. This indicates that physicians and other care providers have an important task in getting rid of the prevailing misconceptions about hospice care and in increasing awareness about it. This would greatly help in changing the attitude of minority community about hospice care and lead to greater utilization of hospice services. This study also attests to previous findings that educational programs to spread awareness about hospice care will help remove apprehensions about end of life care services. [Yuri et.al, (2010)]

Discussion

Hospice offers the best quality of services for the terminally ill patients. Growing body of evidence suggests that hospice environment is the best for end of life caregiving compared to hospital settings. Despite these advantages, there is still a distinct lack of willingness among the U.S. population in choosing Hospice services. Within the national population, the minorities including the African-Americans, Hispanics and the Asian-Americans are disproportionately served in the hospice facilities. The research studies that were discussed above clearly highlight this discrepancy in end of life care utilization among the minority population. For instance, Jennifer et.al (2007) reported poor utilization of hospice programs in regions with high minority population. The researchers reported that cultural and social factors might have a big role in this disparity. The fact that African-Americans have high death rates among people with cancer and a generally prevailing mistrust of healthcare may be one of the important reasons why hospice care is not well accepted among the minority community. This in the light of the fact that Medicare requires that curative treatments be stopped before hospice services could be started creates more confusion and doubts.

Givens et.al (2010) concluded that a more comprehensive outlook into the socioeconomic, cultural and systemic factors that affect hospice enrollment is necessary to improve the usage of hospice Facilities by the minority population. Cultural factors play a significant role in opting for Hospice care. For example, in the African-American culture there is more stress on the value of life that often-aggressive interventions are preferred over choosing palliative treatment. This is attested from the results of Amber et.al (2009). Lilan (2008), a review of 13 research studies on the subject also confirmed the under utilization of hospice services in the minority community. African-Americans and Hispanics were underrepresented in hospice settings for PWAs. (People with AIDS). The studies discussed above clearly highlight a problem -- disparity in hospice service utilization among the minorities. These studies also show that the problem maybe multifactorial involving cultural, social, economic and systemic factors. Interventions should therefore seek to eliminate these hindrances to utilization of hospice. As our final study Yuri et.al (2010) showed, there are several enabling factors including improved insurance coverage, 'increased awareness about hospice' and successful Acculturation of the immigrant population are the key to improving hospice utilization.