Overcoming barriers to access and utilization of hospice and palliative care services in African-American communities.
ABSTRACT While there is ample evidence to support the need for hospice and palliative care services for African Americans, only 8% of patients who utilize those services are from African-American communities. The underutilization of end-of-life and palliative care can be attributed to several barriers to service access including incompatibility between hospice philosophy and African-American religious, spiritual, and cultural beliefs; health care disparities; distrust of the medical establishment; physician influence; financial disincentives, and hospice admission criteria. Suggestions for dismantling barriers to care access include developing culturally competent professionals in the health and human services, expanding the philosophy of hospice to include spiritual advisors from client communities, and funding national initiatives to promote improved access to health care at all stages in the life cycle of members of all underserved communities.
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ABSTRACT: The authors investigated whether there were racial disparities in the receipt of hospice services within geographic residence and socioeconomic status (SES) levels. In total, 117,894 patients aged ≥66 years with nonsmall cell lung cancer (NSCLC) were identified from the Surveillance, Epidemiology, and End Results-Medicare linked database who had received hospice services in the last 6 months before death and who died between January 1, 1991 and December 31, 2005. Multivariate odds ratios (ORs) with 95% confidence intervals (CIs) using mixed-effects logistic regression models were used to describe relations. In urban areas, there were significant disparity trends in age/sex-adjusted rates for blacks and Asians/Pacific Islanders compared with whites (P = .003 and P = .036, respectively). Blacks (OR, 0.79; 95% CI, 0.75-0.82), Asians/Pacific Islanders (OR, 0.42; 95% CI, 0.39-0.46), and Hispanics (OR, 0.81; 95% CI, 0.73-0.91) were less likely to receive hospice services. In rural areas, blacks were 21% less likely to receive hospice services (OR, 0.79; 95% CI, 0.63-0.98). Patients in the poorest socioeconomic status (SES) quartile were 7% less likely to receive hospice services (OR, 0.93; 95% CI, 0.86-1.00). Moreover, within stratified SES quartiles, blacks and Asians/Pacific Islanders had lower receipt of hospice services, and Asians/Pacific Islanders were the least likely to receive hospice services, particularly those in the poorest SES quartile. In general, older patients and women were more likely to receive hospice services. There were substantial disparities in the receipt of hospice services among ethnic minorities within urban and rural areas and within SES levels. The results indicated that efforts are needed to identify barriers, enhance support, and educate patients on the benefits of hospice services.Cancer 04/2011; 117(7):1506-15. · 5.20 Impact Factor
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ABSTRACT: From 2000 to 2007, 11,793 cancer patients received treatment in Kuwait. Non-Kuwaitis accounted for 6,016 (51%) patients. They came from 68 countries, mainly from the World Health Organization Eastern Mediterranean (59%) and South-East Asian (20%) regions. The majority (69%) was from low- and low-middle income countries. Thirty-seven percent were from non-Arabic speaking countries. To provide culturally-competent care for expatriate patients, there is a need to explore the impact of their ethnic, sociocultural, economic, language diversity, and expatriation-related stressors on different aspects of cancer care.Journal of Psychosocial Oncology 05/2012; 30(3):380-5. · 1.04 Impact Factor
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ABSTRACT: Diversity in the US population is increasing, and evaluating the quality of culturally sensitive hospice care is important. A survey design was used to collect data from 743 patients enrolled in hospice or their family members or caregivers. Race/ethnicity was not significantly associated with any of the hospice interventions or outcomes. Patients were less likely to be satisfied with the overall hospice care (OR = 0.23, 95% CI = 0.065-0.796, P = .021) compared to other type of respondents. Satisfaction with emotional support was substantially associated with the increased likelihood of satisfaction with pain management (OR = 3.82, 95% CI = 1.66-8.83, P = .002), satisfaction with other symptom management (OR = 6.17, 95% CI = 2.80-13.64, P < .001), and of overall satisfaction with hospice care (OR = 20.22, 95% CI = 8.64-47.35, P < .001).The American journal of hospice & palliative care 09/2012;
OMEGA, Vol. 50(2) 151-163, 2004-2005
OVERCOMING BARRIERS TO ACCESS AND
UTILIZATION OF HOSPICE AND PALLIATIVE CARE
SERVICES IN AFRICAN-AMERICAN COMMUNITIES
CAROLE A. WINSTON, PH.D.
PAULA LESHNER, MSW
JENNIFER KRAMER, MSW
GILLIAN ALLEN, MSW
University of North Carolina at Charlotte
While there is ample evidence to support the need for hospice and palliative
care services for African Americans, only 8% of patients who utilize those
services are from African-American communities. The underutilization of
end-of-life and palliative care can be attributed to several barriers to service
access including incompatibility between hospice philosophy and African-
American religious, spiritual, and cultural beliefs; health care disparities;
distrust of the medical establishment; physician influence; financial disincen-
tives, and hospice admission criteria. Suggestions for dismantling barriers to
care access include developing culturally competent professionals in the
health and human services, expanding the philosophy of hospice to include
spiritual advisors from client communities, and funding national initiatives
to promote improved access to health care at all stages in the life cycle of
members of all underserved communities.
Less than a decade ago, the two leading causes of death for African Americans1
and European Americans2were remarkably similar. Death from heart disease
? 2005, Baywood Publishing Co., Inc.
1The terms African American, Black American, and Blacks will be used interchangeably to
describe people of African descent who self-identify as African or Black American.
2The terms European Americans, White Americans, and Whites will be used interchangeably to
identify people of White European ancestry.
and cancer ranked first and second across both groups. However, today African-
Americans have a 50% higher mortality rate than European Americans for heart
disease and cancer (including presentation at later stages of the disease), with
and AIDS (Crawley et al., 2000; Henry J. Kaiser Foundation, 1999; Payne, 2001).
In 1999, because of the dramatic increase in the rates of HIV infection and AIDS
in the African-American community, AIDS was the sixth leading cause of death
for African-American males, and the tenth leading cause of death for African-
these statistics, is it clear there is a justifiable need for hospice and palliative care
in African-American communities (Reese, Ahern, Nair, O’Faire, & Warren,
1999). However, statistics from the National Hospice and Palliative Care Organi-
zation (NHPCO) indicate that less than 8% of hospice-eligible African Americans
actually utilize hospice care, compared to 83% of European Americans (Andino,
2001; Crawley et al., 2000). In sum, it appears that care for the terminally ill is
inadequate in Black communities.
It is important to understand the issues that prevent a significant segment of the
American populace from accessing hospice and palliative care services. The
nature of care individuals receive at the end of life reflects the values and ethics
of this society, making it incumbent upon those in the helping professions to
recognize and resolve existing service access disparities. This article will explore
some of the barriers to the utilization of hospice and palliative care for African
Americans, and how those barriers might be eliminated, from the perspective
of several professionals working in Charlotte, North Carolina, in the fields of
Health and Human Services.
exist, there are core Africentric attitudes, customs, and beliefs that bind those in
the Black community to one another despite their many differences. With that in
mind, there continues to be a need to fully understand the explanations for
underutilization of palliative care and end-of-life services in African-American
communities. Indeed, there have been few empirical studies to further the
understanding of this phenomenon.
A review of the literature suggests that service underutilization may be attribut-
care access that confront many members of the Black community. While examin-
ing the literature, several issues emerge that begin to explain why these services
are underused including: religious, spiritual, and cultural incompatibility with
hospice philosophy; disparities in health care; distrust of the medical establish-
152/WINSTON ET AL.
Religious, Spiritual, and Cultural Beliefs and Practices
The meaning and experience of life for most African Americans are complex
and diverse, shaped by historical and contemporary sociocultural events including
slavery, racism, discrimination, and oppression. The experiences and meanings
associated with the pain and suffering that can accompany the end of life are
equally complex, diverse, and sometimes paradoxical. With regard to death and
dying, some religious and spiritual beliefs that are germane to African-American
culture tend to reflect a view of death as a “welcomed friend.” Pain and suffering
are not to be avoided but rather to be endured as part of a spiritual commitment
(Crawley et al., 2000). Viewed through this lens, there is an acceptance of the
inevitability of death that comes at the end of a life marked by both longevity and
a belief that death is merely a transition from an earthly to a heavenly existence
(Johnson, 1992). There is a “better life after death, without sickness, disease,
poverty, or hunger, a life in which victims of injustice will be compensated”
benevolent and has miraculous powers that can bring about recovery and extend
n.d.). This spiritual view of a welcomed death is often incompatible with the goals
of palliative care, which are to relieve physical, psychological, and spiritual
suffering that can attend the end of life. Indeed, many individuals in the Black
community view suffering as having been sent by God to test one’s faith. Thus, to
consider and accept hospice services might be counterintuitive to one’s most
Because the Black church continues to function as a significant religious,
political, and social institution in Black communities, the African-American
pastor is often sought for guidance when families are dealing with complex
issues surrounding death and dying. A qualitative study of African-American
pastors reveals their support of an African-American cultural belief system that is
opposed to accepting terminality, planning for it, or discussing it with others.
Further, the participants described a cultural value that one’s own people—church
and family— should provide care in terminal illness, rather than strangers (Reese
et al., 1999, p. 553).
Even as an omnipotent God determines when one dies, many Black Americans
perceive death as a struggle to be overcome. In the African-American community,
the need to struggle can overshadow concerns about quality of life (Goodkind,
2001). For example, several studies examining differences by race in patient
preferences for curative care end-of-life treatments report that African-American
patients tend to request more life-sustaining treatments than their White counter-
parts (Hallenbeck, 1999; Ita, quoted in Reese et al., 1999; Mebane, Oman,
Kroonen, & Goldstein, 1999; Payne, 2001; Thomas, 2001). Black Americans are
HOSPICE AND PALLIATION IN AFRICAN-AMERICAN COMMUNITIES/153
also more likely to opt for aggressive treatment interventions even when the
patient is in a persistent vegetative state (Neuberger & Hamilton, 1990). Not-
withstanding that African Americans are more likely to prefer aggressive life
prolonging care than White Americans, they are less likely to receive it (Borum,
Lynn, & Zhong, 2000). Mebane et al. (1999) found that physicians and patients
share the same patterns of preference by race, with African-American physicians
being more likely than White physicians to request aggressive treatments for
themselves in hypothetical scenarios, despite having professional knowledge of
the processes and outcomes of such aggressive interventions. The finding that
physicians and patients have similar patterns of preference by race suggests that
embedded cultural identity that values life and the hurdles one must overcome
to survive in a dominant culture. Paradoxically, the “denial of death”(Crawley
et al., 2000, p. 2518) can be understood as a healthy response to the experiences
of social and environmental disparities experienced throughout life; one fights
to live at all costs (Crawley et al., 2000).
Disparities in Health Care
Equal access to all medical care, including hospice and palliative care, has
been denied to members of the Black community through “targeted medical
neglect “ (Holloway, 2002, p. 3), practices of racial exclusion including segre-
gation (both de jure and de facto), and social and economic discrimination.
The Commonwealth Fund completed a survey that included 1,037 Americans
identifying themselves as African American or Black out of a total sample size
of 6,722. Even among African Americans who were employed, high poverty
rates and high uninsurance rates continued to erode their basic access to care.
Across all ages and more notably by age 50, African Americans were found
to be living with higher rates of chronic diseases. Although having a doctor
familiar with your health concerns is a key to obtaining quality care, 28% of
African-American adults said they had no regular doctor, compared with 19%
of White adults. Those patients who did have access to medical care reported
having significant difficulty securing access to specialists (Henry J. Kaiser
African Americans were more likely to cite hospital emergency rooms, clinics,
or “nowhere” as their usual source of care (22% of Black adults compared with
9% of Whites), and 22% of African Americans compared with 15% of White
Americans reported little or no choice in where they go for care. When emer-
gency departments services are sought, compared with Whites, Blacks experience
longer waits and are more likely to leave without being seen (Pear, 2004). Lack
of a regular health care provider greatly undermines quality of care, and African
Americans without a regular physician are less likely to receive preventive
154/ WINSTON ET AL.
services, and are less confident in and less satisfied with their medical care
(Collins, Tenney, & Hughes, 2002; Ebersole & Hess, 1998).
In studies where patients’ sociodemographic characteristics (e.g. education,
income level), insurance status (e.g., publicly or privately funded insurance),
and clinical factors (e.g., co-morbid illness, severity of disease) are controlled,
racial and ethnic minority patients are found to receive a lower quality and
intensity of healthcare and diagnostic services across a wide range of medical
procedures and disease areas leading to poorer outcomes and higher rates of
mortality (Geiger, 2000; Kressin & Petersen, 2001; Vence, 2001).
When African-American patients are seriously ill, in pain, and dying, they are
more often than not at risk for undertreatment. African Americans are less likely
than Whites to receive effective pain treatment across all healthcare settings,
including hospital emergency rooms, inpatient services, outpatient clinics, and
nursing homes (Bonham, 2001). It has been suggested that the failure to properly
treat pain may be due to the lack of an established patient-physician relationship
in emergency settings, and the influence of racial stereotypes on how physicians
undertake the treatment of Black patients, including failure to make sufficient
inquiry about the pain patients are experiencing. However, even when con-
trolling for insurance status and other socioeconomic factors, research reveals
that Black Americans are more likely than Whites to report undertreatment of
pain (Payne & Medina, 2001).
It is widely acknowledged that assessment of pain is the first step in its
management. African Americans are less likely than Whites to receive basic
hospital services such as patient-history taking, diagnostic tests, and physical
lead to assessment of pain and subsequent treatment. This disconnect in
communication between physicians and their African-American patients is
further evidenced by the physician’s failure to provide information about the
seriousness of their condition or to discuss test and examination findings with
them (Vence, 2001).
One study published in the New England Journal of Medicine found that
pharmacies in communities of color do not stock enough painkillers. Only
one in four drugstores in New York City’s predominantly Black and Hispanic
neighborhoods could immediately fill a prescription for opiate medications,
whereas nearly three out of four pharmacies in largely White areas could fill the
order. An accompanying editorial noted that this was just one of several studies
predominant factor (Payne & Medina, 2001; Memorial Sloan-Kettering Cancer
Center, 2002). Another barrier to effective pain management that transcends race
and culture is the refusal of some insurance companies to cover some pain
does not pay for oral drugs delivered outside the hospital setting (Memorial
Sloan-Kettering Cancer Center, 2002).
HOSPICE AND PALLIATION IN AFRICAN-AMERICAN COMMUNITIES/ 155