Barriers to Using Palliative Care

Abstract

As the hospice care setting becomes more racially and ethnically diverse, attending to the different conditions and needs of various groups is essential to providing optimal care. African Americans make up only a small percentage of hospice users in the United States. This article highlights barriers associated with the underenrollment of African Americans into hospice and palliative care programs. A thorough analysis of the literature was conducted to define hospice and palliative care and assess circumstances that impact the use of hospice services by African Americans. Many African Americans are not choosing hospice care because of cultural issues or knowledge deficits, whether through lack of communication or low literacy. Healthcare providers can begin by familiarizing themselves with hospice organizations and developing and putting into practice strategies to communicate with and educate patients and families about hospice care in a culturally sensitive manner.

A Review and Considerations on Palliative Care Improvements for African Americans With Cancer

“…41,42 African American culture is grounded by a social network of care where family members embrace caregiving for the sick as a valued task that is accepted through generations to show dignity and respect to their loved ones. 43,44 Within the Afro-Caribbean population, there tends to be a greater emphasis on the interdependence of family members than on individual autonomy, and it is common for the sick to be cared for in their own homes by family members. 45 Therefore, it is discernable that African American caregivers may be reluctant to engage palliative care or hospice services for their loved ones due to perceptions that it will require relinquishing their caregiving role.…”

“…45 However, many African Americans see death as a transition, rather than a final state, and a good death is equated with being right with God. 44 A common belief in many African Americans is that the acceptance of death may indicate a lack of ones "faith" and praying for miraculous healing is more acceptable within their cultural community. 43,44 Some patients may be less inclined to accept referrals to palliative or hospice care out of fear of being viewed by their ethnic peers or support system as giving up hope or lacking faith.…”

“…44 A common belief in many African Americans is that the acceptance of death may indicate a lack of ones "faith" and praying for miraculous healing is more acceptable within their cultural community. 43,44 Some patients may be less inclined to accept referrals to palliative or hospice care out of fear of being viewed by their ethnic peers or support system as giving up hope or lacking faith. 43 Spiritual beliefs and practices can also be associated with improved health outcomes.…”

“…43 The legacy of slavery and economic and social discrimination has created distrust between African Americans and the US health care system. 43,44 This mistrust may be a barrier to African Americans seeking or receiving care from health care providers. African American patients are less likely to receive symptom support and routine treatment for their illnesses, so it should come as no surprise that there may be a delay in seeking health care for end of life out of concern that interventions may be provided to hasten death.…”

Engaging patients and families to create a feasible clinical trial integrating palliative and heart failure care: results of the ENABLE CHF-PC pilot clinical trial

“…The southeast has a high proportion of individuals of black race; this population experiences the highest burden of illness from HF in the US and at a much younger age than whites [ 45 ]. Blacks have also been noted to have high rates of healthcare system mistrust and a much lower uptake of palliative and hospice services than whites [ 46 – 51 ]. In response to these factors, we reduced our age eligibility criterion from 65 to 50 years and contracted with a recruitment service who was highly-experienced in community-based research in racially underserved populations and maintained weekly communications with the recruitment service and UAB cardiologists at HF clinical meetings.…”