Barriers in Hospice Use Among African Americans With Cancer

Angela D. Spruill, MSN, ANP-BC, OCN; Deborah K. Mayer, PhD, RN, AOCN, FAAN; Jill B. Hamilton, PhD, RN

Disclosures

Journal of Hospice and Palliative Nursing. 2013;15(3):136-144. 

In This Article

Abstract and Introduction

Abstract

Forty percent of the deaths that occur in the United States used hospice services, but that number is much smaller for African Americans. African Americans' underutilization of hospice services may not offer them the benefits of this holistic model of end-of-life care. Several factors have been hypothesized for underutilization and include cultural, environmental, religious, and historical perspectives. The purpose of this literature review was to explore the barriers preventing African Americans with cancer from using hospice services. Documentation of underutilization, desire for aggressive care, knowledge of hospice, lack of diversity among hospice staff, religious/hope beliefs, mistrust of the healthcare system, and access to hospice were identified in this review as barriers to use. Interventions should target these barriers to increase utilization. We also need to better understand how African Americans die when not in hospice.

Introduction

Cancer is the second leading cause of death in the United States, accounting for one in four deaths.[1] African Americans (AAs) are disproportionately affected by cancer when compared with other racial groups.[1] The incidence rate of all cancers in AAs is 504.1 per 100 000 people compared with 470.1 per 100 000 people in the general population.[2] African American men experience a 33% higher cancer death rate than do white men, and AA women have a 16% higher death rate than do white women. While the overall 5-year relative survival rate for all races has improved, AAs continue to have smaller decreases in death rates.[3] Despite these decreases, health disparities continue to persist in both the incidence and rate of death from cancer among the AA community.[1,3] As a result of higher cancer death rates, one may expect a higher use of end-of-life services, yet AAs experience disparities in end-of-life care, specifically in regard to lower hospice use.

The Institute of Medicine's "Approaching Death: Improving Care at the End of Life" defined a "good death" as "one that is free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards."[4] A good death should be an expectation and achievable by all individuals, whereas a "bad death" was described as unnecessary suffering and a disregard for patient's or family's wishes.[4]

Hospice is a holistic model of care for individuals at the end of life that focuses on comfort and palliation of symptoms instead of cure of disease. The goal of hospice is to provide nursing and medical care as well as spiritual and emotional support. Hospice services can be delivered in the home (40.1%), acute-care facility (10.1%), nursing home (18.9%), long-term-care facility (9.6%), or a freestanding hospice center (21.2%).[5] Utilizing compassion and an interdisciplinary approach, hospice use decreases pain, improves patient and family satisfaction, decreases spiritual distress, offers enhanced bereavement services, and may prolong life.[6–8]

In 2009, 41% or 1.56 million people who died in the United States used hospice services.[5] Cancer was the single most common diagnosis comprising 40.1% of the hospice population; the remaining 59.9% was a combination of diagnoses including heart disease, dementia, and diseases of the kidney, liver, and lung.[5] Despite a higher incidence rate of cancer, shorter survival time after diagnosis, and higher cancer death rates, AAs made up only 8.7% of the population who used hospice in 2009,[3] and they were less likely to use hospice services compared with other racial groups.[5]

Having a diagnosis of cancer may also affect the rate and timing of hospice use among all ethnicities. Hill and Hacker[7] suggest that a barrier to hospice use among individuals with cancer may lie with the oncologist and with the number of cancer treatments as there are often several options for therapy before discontinuing curative treatment. As such, oncologists tend to refer patients for hospice care later than do other physicians, and patients may feel that more can be done.[7,9]

Of the approximate 1.56 million hospice users, several studies show that AAs use hospice at lower rates than do whites and are summarized here. In their study comparing hospice use and demographics among ethnicities, Colo`n and Lyke[10] evaluated 1958 AA, Latino, and white hospice patients. They found that AAs use hospice significantly less than do whites (P < .001).[10] Using a retrospective analysis of Surveillance, Epidemiology, and End Results (SEER) data of 70 669 cancer patients who died, Haas et al[11] examined whether the racial composition of a community is associated with the use of hospice. As a result of their study, they found that 46% of individuals who died of cancer used hospice during the last year before death. Of those who used hospice, AAs used it significantly less than did whites (42.5% vs 46.5%).[11] Virnig et al[12] conducted a retrospective analysis of SEER data of 651 783 oncology patients to evaluate the variability of hospice use across cancer diagnoses. They discovered that, for all cancers, AAs were significantly less likely to receive hospice services than non-AA patients (P = .0001).[12]

These findings are also supported by a study that evaluated hospice use rates in US nursing homes. Using a sample of 288 202 AA and white nursing home residents with access to hospice, AA nursing home residents used hospice less than did white residents (35.4% vs 39.3%) even when controlling for gender, age, education, and diagnosis.[13] Keating and colleagues[14] also evaluated variation in hospice use among cancer patients. They evaluated the influence of patient characteristics, physician characteristics, and local health centers to explain variations in hospice enrollment. After evaluating data from 3805 oncology patients who died of lung, colorectal, breast, or prostate cancer, Keating and colleagues[14] found that there were no significant differences in hospice enrollment among racial groups (P > .2).

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