GAPS
in End-of-Life Care
of white Medicare patients enrolled in hospice care
prior to their deaths, compared to 38. 3 percent of African-Americans, 35. 4 percent of Asian-Americans and 41.9 percent of Hispanics. Choosing hospice care, which focuses on
easing pain, controlling nausea and providing other comfort measures rather than attempting to treat the disease,
is a highly personal decision regardless of background. But
there is a growing awareness that more needs to be done to
address factors, such as mistrust of the medical profession
or spiritual beliefs, that prevent or stall end-of-life discussions between members of racial and ethnic minorities and
their health care providers.
Rhodes, an African-American who was a medical
student when her mother died, says personal experience
spurred her to want to help African-Americans and other
minorities plan better for their final days. Today, she
studies end-of-life health disparities at the University of
Texas Southwestern Medical Center in Dallas and is one
of a community of researchers and clinicians exploring
how to promote end-of-life discussions among people
of different races and ethnicities. Approaches range
from creating videos to launching outreach and educational programs through churches, barber shops and
beauty salons. Rhodes also is participating in a multisite research study comparing the effectiveness of two
end-of-life planning tools. The $5.8 million study, led by
Kimberly S. Johnson, a geriatrician at Duke University
School of Medicine in Durham, North Carolina, is seeking to enroll a total of 800 white and African-American
adults with metastatic cancer and other advanced
chronic diseases living in the southern United States.
Meanwhile, Rhodes is studying the effectiveness of a
25-minute video she developed with colleagues featuring
African-American health care providers and ministers;
the wife of one of the ministers died of cancer. In the
video, they reflect on decisions that need to be made
during a loved one’s final days, as well as how end-of-life
care might fit in with spiritual beliefs. Rhodes is tracking
how many viewers of the video later complete advance
care paperwork and hopes that its explanations will resonate with African-American patients getting outpatient
care for late-stage cancers at Parkland Hospital in Dallas.
In the summer of 2017, Sheila Long met with a research
assistant in a private room at Parkland to watch the video
and answer questions about it. The 59-year-old Dallas resi-
dent, who has three grown children and worked for years as
a short-order cook, has undergone surgery, chemotherapy
and radiation since a stage III malignancy was diagnosed in
one breast in 2011. T wo years later, the disease was found in
the other breast.
Long says she appreciated that the video discussed
the role of religious faith. “I really don’t think I could go
through what I’m going through without having a spiritual
background,” says Long, who prays before every treatment.
“What I know to do is to pray about everything and be
hopeful and prayerful for the best.”
Disparities and Their Underpinnings
The history of relationships between minority patients and
the medical profession includes incidents like the notorious
Tuskegee syphilis study, in which African-American men
were monitored but not treated for decades as their syphilis
progressed, even after penicillin’s effectiveness in treating
the condition was discovered. In addition, Justin Sanders, a
palliative care physician at the Dana-Farber/Brigham and
Women’s Cancer Center in Boston, notes that more recent
and personal experiences can foster mistrust.
Sanders helped conduct a 2016 focus group with African-American church members living near Charleston, South
Carolina, to assess a particular conversational approach
to advance care planning discussions. He was shocked by
what some of the participants described as their typical
interactions with doctors and other clinicians. “The standard of communication to which many African-American
patients are accustomed is appalling,” he says.
Among the stories they recounted: very brief interactions
with clinicians, a perception by obese patients that they
were treated differently, and a feeling among many focus
group members that they were being blamed for their medi-
cal conditions. For instance, Sanders says, a patient would
seek out a doctor’s help with a medical issue, “and the
doctor would say, ‘Why didn’t you come to me earlier? You
shouldn’t have been sitting on this for so long.’”
Doubts among nonwhite patients about the quality of
hospice care appear to be grounded in reality, according to a
study published in the July 2017 Health Affairs. Researchers
looked at one year of survey feedback from nearly 300,000
caregivers of patients who had died in nearly 2,500 hospices
around the U.S. They found that, compared with their white
counterparts, black and Hispanic patients were more likely
to be cared for in hospices rated as lower quality, according
to federal quality data.
There also can be a nagging fear among some African-American patients that even discussing end-of-life options
or choosing hospice might somehow hasten their deaths
or fly in the face of God’s will, says Marisette Hasan,
