A lack of health literacy may pose a barrier to patients receiving hospice or palliative care, including delaying their entry into hospice. Patients who lack an understanding of health care information or terminology, do not understand their own illnesses, or who misconstrue the nature of hospice or palliative care may lack the necessary tools to make an informed decision about their end-of-life wishes.
Health literacy is the degree to which individuals can obtain, process and understand basic health information and services needed to make appropriate health decisions, according to the Institute of Medicine. A health illiterate patient may have a strong overall ability to read or have an advanced education but have a limited understanding of information specific to health care.
“A lot of us are walking around with false assumptions about our diagnosis and about our prognosis. An enormous number of people who are living with stage four cancers that are not curable believe that they are curable,” B.J. Miller, hospice and palliative care physician at the University of California Helen Diller Family Comprehensive Cancer Center, told Hospice News. “An under-informed public is not necessarily going to make great decisions for themselves, especially in our health care system where no one has the time to really educate people.”
This lack of information contributes to the tendency of many patients to enter hospice too late or to forego hospice or palliative care altogether. An estimated 71% of adults in the United States are unaware that palliative care exists, studies have shown, even though nearly 80% of consumers who received background information on palliative care say would choose it for themselves or their loved ones.
Other research shows that close to 60% of patients who would benefit from palliative care do not receive those services, despite the availability of community-based palliative care as well as hospital-based palliative care.
Minorities may be disproportionately affected.
In one study, African Americans were more likely than whites to choose aggressive care at the end-of-life even after hearing a verbal description of their condition. Participants with low or marginal health literacy were also more likely than subjects with adequate health literacy to have preferences for aggressive care after hearing the verbal description.
Caucasians accounted for more than 80% of Medicare-enrolled hospice patients in 2017, according to the National Hospice & Palliative Care Organization. Only 8.2% were African American, and 6.4% were Hispanic. Utilization for other demographics such as Asians or Native Americans hovered around 1% or less.
“Health literacy across the board influences end-of-life care decisions. We see huge disparities and health equity issues. I’m very concerned by the fact that, for example, black Americans very frequently get referred to hospice later than white patients, and often are much more uncomfortable around the end of their lives because of it,” Shoshana Ungerleider, M.D., internist at California Pacific Medical Center in San Francisco and founder of End Well, told Hospice News. “We know that [African Americans] are definitely referred to hospice much later than members of other demographics, and I think that we need to do a much better job of reaching out to communities of color.”