Why Minority Elders Do Not Use Hospice Care: Findings From a Systematic Review

Purpose: Despite a continued growth in the number of racial and ethnic minority elders and the minority population overall, lower use of hospice care by minority elders than that of their white counterparts has been evidenced in many studies. Prior research found that hospice patients experience better pain management, better quality of life and better quality of death than non-hospice patients. If minority elders want to access hospice care for such benefits but face barriers in doing so, it becomes important to understand and address the barriers. Also, if minority elders have access to hospice care, but, hospice service providers cannot accommodate their preferences in receiving care, these preferences could serve as barriers, and, therefore, need to be examined. The purpose of this study is to critically review current knowledge regarding factors which hinder minority elders' participation in hospice care and to separate these factors into two groups: 1) barriers that affect access to hospice care and 2) preferences that affect the actual use of hospice care.

Method: A systematic review of previous studies on minorities' use of hospice care was performed using comprehensive health/social science database including CINAHL, SocINDEX, PubMed, and, ProQuest. Prior research was searched for using key words including, end-of-life, palliative, hospice, minority, race, ethnicity, old, and, elderly. When search result was narrowed to studies whose findings report factors that affect minority elders' use of hospice care, fourteen articles (7 public opinion studies and 7 secondary data analyses) were located. Factors found to result in minority elders' lower use of hospice care were identified and categorized.

Results: Identified factors are categorized into two groups. The first is access barriers, which are ‘structural' in nature. This category includes lack of health insurance, limited income, immigration status, Medicare caregiver requirement, lack of knowledge of hospice care, low referral rate by physicians, and, other logistic barriers. The second is minority elders' preferences that could discourage the actual use of hospice care even if they have access to the care. This category has two sub-categories. The first has factors related to ‘minority elders' end-of-life healthcare preferences', which include spiritual/religious beliefs, acculturation, family-centered culture of care, and, mistrust and medical racism. The second has factors related to ‘minority elders' cultural preferences regarding how they receive care', such as, lack of cultural diversity among healthcare providers and language differences.

Implications: Categorization of reasons for minority elders' lower use of hospice care may be helpful to understand if a factor affecting minority elders' hospice use is a structural barrier that prevents their ‘access' to hospice care or a preference that prevents their actual ‘use' of hospice care even when they have access to the care. Understanding these two different types of barriers will assist social workers and other healthcare providers in hospice settings to better advocate for public policy and agency-level programs that would help alleviate barriers and promote minority elders' access to and use of hospice care.