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.


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