Results of a survey of hospices in North Carolina and
South Carolina that Johnson helped lead, published in 2016
in the Journal of Palliative Medicine, revealed that more
than 80 percent of hospice administrators and clinicians
expressed at least some concern about the low proportion
of African-Americans in the patient population served by
the hospices. They also reported efforts to recruit African-American clinical staff, particularly registered nurses.
Even after African-American patients begin hospice
care, however, there are signs that it might not be the
best approach for some, according to a 2008 study looking at the rate at which whites and African-Americans
withdrew from hospice. Among African-Americans,
4. 5 percent chose to leave hospice and return to treat-
ment, compared with 2. 5 percent of whites. Why this
occurs is not clear, Johnson says, but she hypothesizes
that a more flexible model of care might work better for
African-American patients “because then people don’t
have to choose” between hospice and active treatment.
As an example, she describes a Medicare demonstration
project called the Care Choices Model that allows patients
in participating hospices to continue active treatment if
that is their preference.
Long, the breast cancer patient who watched the video at
Parkland Hospital in Dallas, says watching it helped her to
better understand how hospice and palliative care differ. She
recalls looking over the advance care planning documents
that Agada gave her, but she has set them aside for now.
“I told [Agada] that I was feeling really well right now,”
she says. “I told her that since I was feeling good, I would
talk about things with people when the time came.”
CHARLOTTE HUFF is a medical and business journalist based in Fort
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