Psychosocial, cultural, and spiritual health disparities in end-of-life and palliative care: Where we are and where we need to go

Abstract

Background Although health disparities are well documented, the extent to which they affect end of life care is unknown. Limited research funding leads to sparse and often contradictory palliative care literature, with few studies on causal mechanisms. Purpose The purpose of this article is to explore the psychosocial, cultural and spiritual health disparities existing in palliative and end of life care with the goal of identifying future research needs. Method To determine knowledge gaps related to health disparities in psychosocial, cultural, and spiritual aspects of end of life care we draw upon recent literature from multiple databases. Discussion Although there are few data, we do know minorities make little use of hospice, often because of lack of knowledge about hospice or palliative care, family-centered cultures, and preferences for more aggressive end of life care than hospice allows. Conclusion Future research should include a search for theoretical and causal mechanisms; prospective longitudinal investigations; diverse patients, conditions, contexts, and settings; methodological diversity and rigor; and interdisciplinary, culturally sensitive interventions.

African American Elders’ Serious Illness Experiences

“…Even though this knowledge is well documented, the incorporation of spirituality into the care for seriously ill AA elders is lacking (Evans & Ume, 2012; Otis-Green et al, 2012). For example, families of seriously ill AAs were more than two and a half times as likely to report at least one concern in receiving their desired level of spiritual or emotional support at end of life (Welch et al, 2005).…”

“…Furthermore, although comprehensive PC for patients with serious illness improves quality of life, quality of care, and patient satisfaction, the growing population of AA elders with serious illness report disparities in the receipt of PC, dissatisfaction with that care, and care inconsistent with their wishes, leading to decreased quality of life and increased suffering (Cohen, 2008; Evans & Ume, 2012; Johnstone & Kanitsaki, 2009; Welch et al, 2005). In addition, little is known about the AA elders’ cultural values and beliefs about the psycho-social-spiritual dimensions of palliative and end-of-life care (Evans & Ume, 2012).…”

“…In addition, little is known about the AA elders’ cultural values and beliefs about the psycho-social-spiritual dimensions of palliative and end-of-life care (Evans & Ume, 2012). …”

“…Gathering data about cultural values, attitudes, beliefs, and/or preferences related to psychological-social-spiritual (PSS) healing for seriously ill African American (AA) elders is necessary as the basis for patient-centered palliative care PC (Center to Advance Palliative Care, 2010 [CAPC]; Evans & Ume, 2012; National Quality Forum [NQF], 2012). There is some knowledge about barriers to adequate PC for AA elders with serious illness, but the cultural aspects of PSS healing have been sparsely studied (Cohen, 2008; Evans & Ume, 2012; Johnstone & Kanitsaki, 2009; Teno et al, 2004; Welch, Teno, & Mor, 2005). In addition, research analyzing cross-cultural differences in psychological, social, and/or spiritual domains is limited in scope, quantity, and location (Cohen, 2008; Evans & Ume, 2012; Johnstone & Kanitsaki, 2009; Welch et al, 2005).…”

Communication Behaviors and Patient and Caregiver Emotional Concerns: A Description of Home Hospice Communication

“…In hospice care, the needs of the family and patient are equally important. Studies have noted the necessity of specific inclusion of caregivers to facilitate better understanding of the caregivers' needs from a variety of perspectives during end-of-life care (Evans & Ume, 2012;McGuire, Grant, & Park, 2012). More than 80% of hospice patients are older than age 65, and more than 33% are older than age 85 years (National Hospice and Palliative Care Organization, 2012).…”