Demographic populations that historically have been underserved by hospice are also among the most severely impacted by the COVID-19 pandemic. Members of the African American, Hispanic and Native American communities have been disproportionately represented in the numbers of COVID infections and associated mortality.
U.S. counties with a predominantly African American population, for example, tend to see three times the number of infections and six-times the number of COVID deaths than predominantly white counties, according to data published in April.
While no cause-and-effect relationship exists between lower hospice utilization and the rate of COVID cases, both factors are indicative of a number widespread disparities in the health care system as well as society at large, according to Sherita Hill Golden, M.D., professor of medicine and vice president and chief diversity officer for Johns Hopkins Medicine.
“[The rates of pandemic infections and deaths] highlight the social and health inequities in a way that it just makes them glaring. For many of us who have worked with these populations, they’ve been dying at higher rates for heart disease, diabetes, in stage renal disease for years. But those are the chronic diseases, so people die more slowly, whereas [COVID] is an acute infection,” Hill Golden told Hospice News. “It’s the rapidity with which people are dying that is really bringing this to light, but these are not new issues. What it really says is that we still need to address those structural inequities. They are obviously still very much alive and well.”
Factors contributing to the rates of COVID deaths among underserved communities include higher rates of chronic illness that render patients more vulnerable to the virus, general mistrust of the health care system due to negative past experiences, as well as housing instability and inadequate access to jobs that provide health insurance, among other considerations, according to Hill Golden.
Many members of those communities also are employed in public-facing occupations that have been considered essential during the pandemic, meaning that they were less able to shelter-in-place and practice social distancing in the work place.
“These communities really are not trustful of the health care system, and then there’s still some inherent biases in the health care system toward them when they do come in for care,” Golden said. “Those things, for example, have resulted in poor quality of care. Even if people do have insurance and have access to care, they may be reluctant to go because of their experiences.”
In addition to higher rates of COVID infections and deaths, societal inequities have contributed to lower rates of hospice utilization. Hospice-eligible minority patients often pursue high-acuity care that is unlikely to be ineffective at their stage of illness, leading to unnecessary suffering for those patients.
More than 82% of Medicare decedents who elected hospice in 2017 were caucasian, according to the National Hospice & Palliative Care Organization (NHPCO). Comparatively, slightly more than 8% were African-American; 6.4% were Hispanic, and 1.7% were Asian. That year, only 0.4% of Medicare decedents were Native American.
In addition to lower rates of overall utilization, hospice patients who are members of minority communities are more likely to leave hospice, be admitted to the hospital, or visit the emergency department, research has found.
As well as the pandemic, the recent death of George Floyd in Minneapolis and the resulting public outcry has brought many of these health disparities into sharper relief. The hospice and palliative care community has had to do it’s own share of soul-searching to find ways to reduce inequity and expand access to hospice or palliative care among underserved communities, according to industry stakeholders.
“The trauma that a lot of people are living through is something that’s very real. As a part of the system that deals with people’s social and emotional needs, that is looking at mitigating suffering, [hospice and palliative care providers] have to be involved, and we can’t sit back and let someone else speak for us,” said Edo Banach, president and CEO of the NHPCO “We have to acknowledge the fact that we’re a part of the health care system where many are underrepresented, or that has an issue with respect to African American utilization, Latino American utilization and others. A moment like this requires introspection as to what we as hospices can do for our communities and how we need to evolve ourselves.”
Four Minneapolis police officers are facing criminal charges in connection with Floyd’s death. A number of hospice and palliative care organizations joined the chorus of voices decrying the incident, including NHPCO, the National Coalition for Hospice and Palliative Care, and the Center to Advance Palliative Care.
One of the most significant problems contributing to low utilization is an issue that affects patients across all demographics: Lack of awareness.
“People don’t always understand what hospice care is, and I think a lot of families don’t have those important conversations about their wishes at the end of life. Because of these trust factors, a lot of times people are uncomfortable having these conversations with their doctors,” Golden said. “This is now a time for us to really begin to have conversations in our families about what people really do want at the end of life.”
One factor that some stakeholders would like to see addressed is the requirement that a patient must have a terminal prognosis of six months or less in order to access the Medicare Hospice Benefit. Hospice providers and advocates have called for the loosening of the six-month limitation to allow patients to access care earlier in the course of their illnesses, be it through an expanded hospice benefit or via a new palliative care benefit.
“Part of what we talk about when we talk about community-based palliative care is removing some of the artificial barriers to getting interdisciplinary person-centered care. One of the reasons — not the only reason — why we see this racial and ethnic imbalance is because we have a fairly inflexible system,” Banach said. “Community-based palliative care that allows for concurrent care without have to give something up is going to have the impact of providing this kind of care in a more equitable way. That’s not the sole solution, but that’s something I think we need to be introspective about.”