Clinical Trial Summary
Despite the documented benefits of hospice, less than 2 million people utilize hospice
services annually. Underuse disparities are extreme across race and ethnicity as White
Americans comprise 85% of all hospice enrollees. AAs account for only 8% of hospice enrollees
but are more likely to die from the top three hospice diagnoses (i.e. cancer, heart disease
and dementia) than White Americans. Even when AAs enroll in hospice, they spend less time in
hospice than White patients, averaging fewer than seven days in hospice care. Notably, AA
hospice enrollees report a higher degree of satisfaction with end of life care when hospice
is involved, as compared to AAs who are not enrolled in hospice care. There are several
potential barriers that may prevent AAs from enrolling in hospice care including lack of
knowledge of hospice care, mistrust in healthcare, perceived discrimination, health literacy.
AAs routinely report less knowledge of hospice than White Americans, and the information that
AA know about hospice often comes from non-medical professionals and is inaccurate. Some AA
have persistent mistrust in healthcare due to events such as the Tuskegee Syphilis
Experiments and many AA perceive discrimination when accessing healthcare. Data shows that
health literacy is a stronger predictor of hospice use than race and older AAs are more
likely to possess low health literacy. The driving hypothesis of this research is that by
providing clear and accurate information to older AAs will help address the underutilization
of hospice by clarifying misperceptions, building trust, and overcoming literacy barriers.
Patient decision aids (PtDAs) are an evidence-based approach to improve patient agency in
medical decision making. Research shows that AA report a desire for more agency and autonomy
in decision-making yet the use of PtDAs is understudied in AA communities. This proposal
offers a unique opportunity to address many of the potential barriers that may prevent older
AAs from enrolling in hospice, while simultaneously expanding the literature of SDM specific
to older AAs. The goals of this proposal are to evaluate if the relationships between health
literacy and hospice knowledge, attitudes, and beliefs is mediated by mistrust in healthcare
and perceived discrimination among AAs aged 65 or older (Aim1) and to evaluate the effect of
the hospice PtDA on changing hospice knowledge and attitudes and beliefs about hospice in AA
aged 65 and older (Aim 2).
