Schim, Stephanie Myers PhD, RN; Doorenbos, Ardith Z. PhD, RN; Borse, Nagesh N. BPharm, MS

Journal of Hospice & Palliative Nursing: September-October 2006 - Volume 8 - Issue 5 - p 302-307

The purpose of this study was to examine variables associated with cultural competence among hospice nurses. In a cross-sectional descriptive design, a convenience sample of 107 hospice nurses from five different hospice agencies completed a survey that included the Cultural Competence Assessment instrument. Regression analysis revealed a significant association between higher education and cultural awareness and sensitivity, as well as an association between diversity training and self-reported cultural competence behaviors. Findings support the need for additional education and training for hospice nurses and provision of more resources targeted toward enhancing cultural competency.

Thomas, Norma D. DSW, LSW, ACSW


Culture is a critical component of what shapes human experience throughout life. Unfortunately, at the end of life cultural considerations often take a back seat to considerations related to disease processes and functional ability. This article describes why culture is so vital at all stages of life. It also attempts to provide insight into how death, dying, grief, and loss are viewed from a cross-cultural perspective with a focus on African Americans. It presents practice implications for health care professionals.


TUESDAY, Feb. 5 (HealthDay News) -- End-of-life hospice care is used much less often by American blacks than whites, and certain cultural beliefs may explain why, a new survey finds.

An historical mistrust of the health-care system and a strong preference for curative treatment compared to palliative care encourage many black Americans to avoid or delay hospice services, the researchers found.

"Blacks in our sample compared to whites clearly had less favorable beliefs and attitudes about hospice care," said study lead author Dr. Kimberly Johnson, a geriatrician and palliative care specialist at Duke University Medical Center.

She presented the findings over the weekend at the annual meeting of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association, in Orlando, Fla.

Over the past few decades, a growing number of terminally ill Americans have opted for hospice services, which focus on easing physical and emotional suffering in life's final stage rather than curative treatment.

And yet a clear racial gap has emerged in terms of who is using hospice care. According to Johnson, data collected in 2006 found that just 8 percent of hospice enrollees in the United States were black, even though they make up 12 percent of the population. That's compared to whites, who comprise 81 percent of hospice patients, even though they make up 74 percent of the population.

"If you consider that blacks have higher rates of death from cancer and heart disease, which are still the top causes of hospice admissions, then it seems that there is a significant gap there," said Johnson, who is also an assistant professor of medicine at Duke.

To find out why this might be so, her team surveyed 205 white and black adults aged 65 and older (average age 74) on their knowledge and opinion of hospice care.

First of all, older whites were much better informed about hospice compared to their black peers, the study found. While 4 percent of whites said they had never heard of hospice, more than 21 percent of blacks said they were unfamiliar with the concept.

Certain spiritual beliefs also seemed to work against hospice as an end-of-life choice for blacks. "African-Americans were more likely to believe that pain and suffering is sometimes 'part of God's plan' for your life," Johnson said. "Something like that would be inconsistent with the hospice philosophy."

Blacks were also much more likely than whites to press for continued treatment of the underlying disease -- even when the chance that it would help was slim. These individuals may view hospice as "giving up" and therefore resist enrolling in such care, Johnson said.

The biggest factor at play seemed to be a widely held mistrust of the health-care system, coupled with the sense that the system is generally less accessible to black patients. Issues of "trust seemed to explain the racial disparity more than any other factor," Johnson said.

None of this surprises another expert in the field, Ronald Barrett, a psychology professor at Loyola Marymount University in Los Angeles.

"The [historical] stigma and the mistrust of the health-care system is still there," Barrett said. "So, hospice institutions have opened their doors and they are wondering why blacks aren't coming? It's because they have this long history of feeling unwelcome, disenfranchised and marginalized."

Income and insurance concerns also play a role, Johnson said. More than one-third (34 percent) of blacks in the survey thought they could not afford hospice care even if they wanted it, compared to 20 percent of whites. The truth is that the service is typically covered by Medicare, Johnson pointed out.

"Still, among my own patients I'm often asked that -- well, how much will it cost us?" she said.

Barrett's research also suggests that black Americans often consult at length with family and friends on end-of-life decisions, while white patients typically view these choices as something best left to the individual.

Still, racial disparities in hospice care have narrowed somewhat over the past decade, both experts said. "People are more open to the idea, so we are making some progress in that regard," Barrett noted.

For her part, Johnson said notions of hospice may need to become more inclusive to draw in a wider range of patients. That could mean becoming more open to a broader range of attitudes on sickness and dying -- whatever the patent's race or ethnicity.

For example, allowing some amount of curative treatment into the hospice model might help, Johnson said.

"To allow people to receive good palliation while they are still receiving some cure-directed therapies -- that might make for a smoother transition that might be more attractive to African-Americans," she said.

More information

There's much more on hospice care at the Hospice Foundation of America.

SOURCES: Kimberly Johnson, M.D, assistant professor of medicine and geriatrician/palliative care specialist, Duke University Medical Center, Durham, N.C.; Ron Barrett, Ph.D, professor, psychology, Loyola Marymount University, Los Angeles; Feb. 1, 2008, presentation, annual meeting, American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association, Orlando, Fla.


This article is mirrored here for historical purposes:

PALO ALTO, Calif.–Dealing with the reality of a terminal illness is something that prompts many African-Americans to look to the clergy and spiritual leaders, but not necessarily for comfort and support in hospice care. Palliative and hospice services around the United States have been disproportionately favored by whites. Among hospice patients in the United States 83 percent were white, while merely 8.5 percent are African-American, 6 percent were Hispanic and less than 3 percent were Asians and all other minority categories, according to a 2012 report of the National Hospice and Palliative Care Organization (NHPCO).

Yet enrollment in hospice care has grown since Medicare first began offering hospice benefits in 1983, with nearly 1.7 million patients receiving services in 2011 — roughly 45 percent of all deaths in the U.S., according to the NHPCO. Barriers for African Americans, Latinos This comes as no surprise to Virginia Jackson, chief of chaplaincy at the Palo Alto Veteran’s Administration Medical Center Palliative Care Clinic.

“With African-Americans, because of trust and fear issues, we take care of our relatives at home,” she said. “The issue of trust–not being listened to, not being important–is a big issue with the African-American community. There is a lot of fear around trusting a physician around medication; fear of becoming addicted or fear that it may take them out.”

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Hospice care outcomes, such as hospital readmissions and hospice disenrollment, is cut along racial lines, new research indicates.

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- Racial disparities exist for patients in hospice care outcomes, as African American patients experience higher emergency department utilization, readmission, and hospice disenrollment rates than their white counterparts, according to recent research from the Icahn School of Medicine at Mount Sinai Hospital.

In an analysis of over 550 hospices across the country, lead researcher Melissa Aldridge, PhD, MBA, found that African American patients were far more likely to be admitted into the hospital during hospice care.

“We found that black hospice patients were significantly more likely than white hospice patients to be admitted to the hospital, to go to the emergency room, and to disenroll from hospice prior to death,” said Aldridge, who is also an associate professor and vice chair for research in geriatrics and palliative medicine at the Icahn School of Medicine. “These patterns remained after accounting for patient illness, demographics, and type of hospice from which these patients received care.”

In total, black hospice patients saw 14.9 percent hospital admission rates, compared to 8.7 percent for white patients. Nearly 20 percent of black patients visited the emergency room compared to only 13.5 percent of white patients, and 18.1 percent of black patients disenrolled from hospice prior to death compared to 13 percent of white patients.

“These higher rates of emergency department use, hospital admission, and hospice disenrollment by blacks compared with whites were attributable to racial differences within hospices rather than systemic differences between hospices in these outcomes,” Aldridge said.

These outcomes are troubling because they are contrary to the fundamental purpose of hospice care, asserted Aldridge and her research collaborator, Jessica Rizzuto, MPP, a student at the Icahn School of Medicine.

Patients utilize hospice care during serious or terminal illness so they can receive care at home and experience a higher quality of life. Admission into the hospital or emergency department usually results in the patient receiving a higher intensity of care that will likely not make a difference in a terminal prognosis.

These racial disparities mean that some demographics have a higher likelihood of experience poorer quality of life than others.

The pair did not offer a data-driven explanation as to why African American patients experience more hospital care at the end of life, but it is worth pointing out that the study demographics skewed 8 percent black and 92 percent white. In general, black patients do not reap the benefits of hospice care as often as their white peers.

Aldridge and Rizzuto also hypothesized some reasons as to why black patients experience more hospitalizations during hospice care. Patient and family preferences for care, patient-provider communication about the purpose of hospice care, and availability of hospice resources all served as potential explanations for the study’s results.

Ultimately, these results point to a need for further research, Aldridge and Rizzuto said. Healthcare professionals must better understand these cultural differences and disparities to begin working on closing gaps in care and understanding.

“Our findings underscore the need to better understand racial disparities in outcomes after hospice enrollment,” Aldridge stated. “Culturally sensitive interventions that increase understanding of hospice, address shortcomings in provider communication, and improve caregiver resources could help decrease these persistent differences in outcomes.”

Separate research has indicated that longer duration of hospice care is the key to patient satisfaction at the end of life. A 2017 study published in the Journal of Clinical Oncology found that patients utilizing hospice care received better treatment at the end of life.

For example, 91 percent of hospice patients reported receiving pain management medications, compared to 81 percent of patients not receiving hospice care. Family caregivers were also able to see the difference in end-of-life care quality in the hospice setting. Eighty percent of family members said their loved ones received “just the right amount” of pain management, compared to 73 percent of non-hospice patients.

“Patients with advanced cancer often experience pain, dyspnea, and distress at the end of life (EOL), and use intensive, hospital-based services near death,” the researchers concluded. “Hospice offers an alternative, patient-centered model of care focused on relieving suffering, and often delivers services within the home environment.”

Mirrored here for historical purposes from: merge-in-hospice-care-outcomes-experience