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)]
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.
The first and foremost issue in increasing hospice utilization is to create awareness and educate the public about the benefits of hospice care. The talk about pain, death and hospice should be desensitized by addressing these issues in the relevant public media. In many deserving cases hospice referrals are not done, as physicians are unwilling to discuss end of life care with the patient's family. So the healthcare professionals need sufficient training to enable them to discuss hospice provisions and the futility of prolonging aggressive and often invasive and painful curative interventions. The nursing staff being the direct caregivers and direct communicators with the family members are ideal for educating the patient and the family about the hospice care. It is important that the cultural sensitivities of the people are respected and for this purpose, it would be ideal to have a multicultural representation in the hospice staff. This would encourage enrollment from underserved communities, as they could feel more related.
Support should be enlisted from a multidisciplinary team of social workers to educate the public about hospice services. Volunteers could be enlisted from religious communities such as the church. A volunteer network could be established to propagate the hospice concept and its advantages to the beneficiaries. The center for Medicare services should actively advertise hospice care as a way of providing the best quality of end of life care and of avoiding unnecessary hospitalizations and medical expenditures. The federal government should focus more on the hospice operations in rural sectors that are plagued by lack of regular staff and facilities. Additional funding should be allocated to provide added incentives for trained staff working in the rural hospice facilities. In essence, promoting hospice utilization among the minority population would necessitate a collaborative partnership of the patients, family, hospice and nursing facilities, religious and social communities and the referrals. A coordinated approach is the key to success.
Improving end of life care is an important healthcare concern and improving access to hospice services and utilization is a national prerogative. There is clear research evidence citing lack of utilization of hospice services by the minority communities. Several factors including social, economic, cultural factors and lack of awareness act as barriers to enrollment in hospice care. These barriers must be removed by effective interventions. Educational interventions to create awareness and remove misconceptions, improved insurance coverage, and effective cultural integration of migrant population are key social factors. It is high time that the government and the healthcare sector in particular, address these important issues. 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.
1) Jennifer S. Haas, MD, MSPH, Craig C. Earle, MD & John E. Orav, PhD et.al (2007), 'Lower Use of Hospice by Cancer Patients who Live in Minority vs. White Areas', J Gen Intern Med. 22(3): 396 -- 399, Available Online at, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1824733/
2) Ramona L. Rhodes, MD, MPH, (sep 2006), 'Racial Disparities in Hospice: Moving from Analysis to…