Low health literacy among seriously ill patients can impede access to palliative care and complicate efforts to improve health equity.
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.
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 informed decisions.
“The issues are prevalent across health care in general, so people struggle to navigate the health care system to even manage what some would consider more straightforward conditions like diabetes or hypertension. So then the problem just snowballs and compounds by the time they get to living with a serious illness,” Jessica Empeno, national director of clinical engagement for Compassion & Choices, told Palliative Care News. “In order to even access palliative care, people have to understand what it is. You absolutely have that additional compounding layer when the conversation is challenging.”
Low health literacy is very common in the United States, often impacting older adults. 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.
“Elderly managed care enrollees may not have the literacy skills necessary to function adequately in the health care environment,” a Journal of the American Medical Association study found. “Low health literacy may impair elderly patients’ understanding of health messages and limit their ability to care for their medical problems.”
The issue deepens when it comes to palliative care. 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 they would choose it for themselves or their loved ones.
“There are a lot of barriers. Our system is focused on supporting people too often in a one-size-fits-all, and rather than adapting to the needs or listening to the feedback of the community,” Empeno said. “[Clinicians] also feel short for time, and that gets in the way. I think sometimes people don’t realize that they haven’t had the education or training to understand their care.”
Health literacy can also go hand-in-hand with health equity, according to Empeno. It aligns with palliative care providers’ mission to offer care that is tailored to the individual patient and ensure that any patient in need can access the services necessary to effectively treat their condition, she said.
To address this issue, providers can educate their staff about the need for greater health literacy among patients and how to account for that when communicating with patients, Empeno indicated. Operators can also reassess written and other materials to ensure they are appropriate for patients who may have difficulty understanding the information they contain, such as ensuring they are presented at a fourth or fifth grade reading level.
A number of toolkits also exist to help guide providers in these efforts, including resources from the U.S. Centers for Disease Control & Prevention and the Agency for Healthcare Research and Quality.
“The strategies in health literacy are very similar to having a goals-of-care conversation or an advanced care planning conversation,” Empeno said. “It has to be an organizational effort. It has to be something that the organization recognizes is important.”