Understanding End-of-Life Decision-Making Terminology Among African American Older Adults

Abstract

The purpose of the current study was to examine understanding of end-of-life (EOL) decision-making terminology among family caregivers of African American older adults with dementia. This qualitative descriptive study was part of a larger mixed-methods study from which a subset of caregivers (n = 18) completed interviews. Data were analyzed using descriptive statistics and content analyses guided by methods of qualitative analysis. Caregiver interpretation of EOL decision-making terminology varied between associations before and/or after death. EOL decision making was most often a family decision, based on past experiences, and included reliance on resources such as faith or spirituality and health care providers. Patients and families attach meaning to health care terms that should be aligned with health care providers' understanding of those terms. Results provide insight to improve EOL decision making in this population via tailored interventions for patients, families, and health care providers.

Attitudes toward advance care planning among persons with dementia and their caregivers

“…Hirschman et al, 2008;Moss et al, 2018a;Ryan et al, 2017). Moreover, even fewer studies have explicitly addressed racial differences related to these issues, in the context of dementia (Bonner et al, 2014;Connolly et al, 2012;Moss et al, 2018aMoss et al, , 2018b.…”

Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature

“…183 It is also imperative to note that end-of-life decision making among non-Hispanic Blacks (most often a family decision) includes reliance on resources such as faith or spirituality alongside utilization of health care. 59 Similarly it should be noted that faith in God tremendously helps seriously ill non-Hispanic Blacks cope with their illnesses and other life difficulties and challenges. 184 Knowing that the majority of non-Hispanic Blacks prefer to die at home, 105 Payne (2016) argues that there is an opportunity to substantially increase non-Hispanic Black enrollment in hospice programs, 181 One way this can be done is by cultivating the role of religious leaders and faith-based organizations.…”

“…After searching almost fourthly-thousand citations, 284 articles were included in our study, of which 147 were manuscripts that directly addressed end-of-life and hospice care, palliative care, as well as advance care planning and directives that include non-Hispanic Blacks. 4 …”

The Effect of the “Great Village” on Psychological Outcomes, Burden, and Mastery in African American Caregivers of Persons Living With Dementia

“…While African American caregivers have similar rates of depression and anxiety as White caregivers (Knight, Longmire, Dave, Kim, & David, 2007; Pinquart & Sorensen, 2005), they report more benefits from caregiving (Roth, Dilworth-Anderson, Huang, Gross, & Gitlin, 2015). They have significant increases in positive aspects of caregiving over time (Haley et al, 2004), better scores on measures of positive coping (Roff et al, 2004), and higher health-related quality of life compared with Whites (Moss et al, 2017). However, African American caregivers do report less use of antidepressant medications (Sleath, Thorpe, Landerman, Doyle, & Clipp, 2005) and lower utilization of formal support services for their family members (Scharlach et al, 2006).…”