Awareness of Palliative Care, Hospice Care, and Advance Directives in a Racially and Ethnically Diverse Sample of California Adults

Abstract

Background: Numerous studies have documented multilevel racial inequalities in health care utilization, medical treatment, and quality of care in minority populations in the United States. Palliative care for people with serious illness and hospice services for people approaching the end of life are no exception. It is also well established that Hispanics and non-Hispanic Blacks are more likely than non-Hispanic Whites to have less knowledge about advance care planning and directives, hospice, and palliative care. Both qualitative and quantitative research has identified lack of awareness of palliative and hospice services as one of the major factors contributing to the underuse of these services by minority populations. However, an insufficient number of racial/ethnic comparative studies have been conducted to examine associations among various independent factors in relation to awareness of end-of-life, palliative care and advance care planning and directives. Aims: The main objective of this analysis was to examine correlates of awareness of palliative, hospice care and advance directives in a racially and ethnically diverse large sample of California adults. Methods: This cross-sectional study includes 2,328 adults: Hispanics (31%); non-Hispanic Blacks (30%); and non-Hispanic Whites (39%) from the Survey of California Adults on Serious Illness and End-of-Life 2019. Using multivariate analysis, we adjusted for demographic and socio-economic variables while estimating the potential independent impact of health status, lack of primary care providers, and recent experiences of participants with a family member with serious illnesses. Results: Hispanic and non-Hispanic Black participants are far less likely to report that they have heard about palliative and hospice care and advance directives than their non-Hispanic White counterparts. In this study, 75%, 74%, and 49% of Hispanics, non-Hispanic Blacks, and non-Hispanic White participants, respectively, claimed that they have never heard about palliative care. Multivariate analysis of data show gender, age, education, and income all significantly were associated with awareness. Furthermore, being engaged with decision making for a loved one with serious illnesses and having a primary care provider were associated with awareness of palliative care and advance directives. Discussion: Our findings reveal that lack of awareness of hospice and palliative care and advance directives among California adults is largely influenced by race and ethnicity. In addition, demographic and socio-economic variables, health status, access to primary care providers, and having informal care giving experience were all independently associated with awareness of advance directives and palliative and hospice care. These effects are complex, which may be attributed to various historical, social, and cultural mechanisms at the individual, community, and organizational levels. A large number of factors should be addressed in order to increase knowledge and awareness of end-of-life and palliative care as well as completion of advance directives and planning. The results of this study may guide the design of multi-level community and theoretically-based awareness and training models that enhance awareness of palliative care, hospice care, and advance directives among minority populations.

Racial differences in institutional trust and COVID-19 vaccine hesitancy and refusal

“…This mistrust can lead to under-utilization of health care services, a lack of satisfaction with available services or providers, low adherence to medical advice, and reduced compliance with recommended health behaviors [ 18 , 19 ]. Racial disparities and other impacts of racism have been linked to rates of medical mistrust [ 20 – 22 ]; as such, higher perceived discrimination correlates with higher medical mistrust [ 23 , 24 ].…”

Awareness of Hospice Care Among Rural African-Americans: Findings From Social Determinants of Health Framework

“…This study found a positive association between age and hospice awareness among the participants. Although limited evidence on such an association exists in prior studies, a recent study by Bazargan et al 39 also found age was significantly associated with hospice awareness. As of 2018, most hospice care recipients were aged 65 or older, consisting of almost 84% of the Medicare Hospice Benefit beneficiaries.…”

“…Healthcare professionals should tailor the information to the rural residents' level of health literacy and discuss it with them in a culturally sensitive way. 39 Also, partnering with community stakeholders and liaisons (eg patients, family, and pastors of local churches) can help identify the most effective forms and venues for the dissemination of hospice information. 39,52,53 Such information cannot be provided only in the written format: interactive, verbal communications accompanied with informational brochures to take home may be more effective in promoting rural residents' hospice awareness than written materials alone.…”

“…The majority (82.1%) of study participants had heard of hospice care at a rate equivalent to or higher than those reported in previous studies. For example, in a survey study of California residents (18+), Bazargan et al 39 found that 81.6% (586 out of 718) of Black participants reported having heard of hospice care. Similarly, Shalev et al 40 reported that 79.7% (106 out of 133) of Black participants in a survey of New York State residents (18+) provided an answer when asked to define hospice care.…”

Socio-Demographic Factors Affecting the Elderly's Preference for Life-Sustaining Treatment: Based on the 2017 National Survey of Older Koreans

“…However, this fear can be reduced to prepare for and understand death properly. The process of preparing for death, such as ACP, differs between societies and cultures [6]. A multidisciplinary Delphi panel defined ACP as "a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care" [7] The purpose of ACP is to make decisions or choose preferences about the planning and use of hospice-palliative care.…”