A lack of health literacy may make it more difficult for patients to receive palliative or hospice care when needed. This article, from Hospice News, takes a closer look at why improving health literacy can make all the difference when it comes to getting proper care.
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.
As many as one-third of Medicare enrollees have a low-level of health literacy, and research indicates that this increases across-the-board health care costs by as much as 5% annually.
“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.