U.S. minorities find getting quality end-of-life care a challenge, and health care costs and cultural beliefs about death are playing a role, a recent study finds.
The findings come from research published online Nov. 17 in the Journal of Palliative Medicine.
The barriers are a growing public health issue as the U.S. minority population is on course to become the majority by the year 2044, said Vyjeyanthi Periyakoil, MD, lead study author and director of Palliative Care Education and Training at Stanford University’s School of Medicine.
“Cultural competence training is not optional anymore,” Periyakoil told The Nation’s Health. “It’s in the core part of what we need to do to train all trainees and clinicians from any sub-specialty.”
The study looked at more than 300 people of different races and ethnicities between the ages of 50 and 80 across five California cities.
Researchers asked all participants if receiving high quality end-of-life care was important to them. They were also asked to list the top three barriers they face in getting that care, if there were any.
Of 315 participants, 191 — 60.6 percent — said they faced barriers, which spanned six types, such as a communication gap between themselves and doctors, finance or health insurance issues and cultural or religious barriers.
Additionally, women were more likely to report barriers than men, with nearly 75 percent of women younger than age 80 citing barriers, the study said. This may be because women usually fill caregiver roles in their families and may be more familiar with end-of-life care issues, Periyakoil said.
Education level was the main factor in determining the biggest barrier to quality end-of-life care for participants.
Finance or health insurance issues were the biggest barriers for people without formal education. But people who had at least an elementary school education or more said doctor behavior, such as a lack cultural sensitivity or empathy, was the biggest barrier, the study found.
While cultural sensitivity is important, Periyakoil said it is important for the public health community to find ways to empower patients to start end-of-life care discussions with their doctors, as they cannot always rely on their care provider to start it for them. An example of a tool is the Stanford Letter Project, a Stanford Medicine initiative that provides a letter template online in multiple languages so patients can outline their wants and needs for end-of-life care, according to Periyakoil.
A federal rule finalized in October will also empower patients to start end-of-life care conversations with health care professionals. Starting in January, the Centers for Medicare and Medicaid Services finalized a rule where Medicare will pay doctors whose patients want to discuss advance care planning.
“We find that anything that is patient driven and patient endorsed seems to work much better,” Periyakoil said.
For more information, visit http://online.liebertpub.com/doi/full/10.1089/jpm.2015.0403.
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