(Published in LINKS: Minority Research & Training - Spring 2010 )
Hospice care, for many people, is intimately tied to this country’s growing discussion about end-of-life care. Understanding different communities’ knowledge and beliefs about end-of-life care, as well as the factors that influence their decision-making, are important areas of research. The burgeoning older population adds to the urgency of this work. A research study published in the Journal of Palliative Medicine (October 2009) demonstrates a difference between African American and white participants’ exposure to information about hospice and discusses how this exposure might influence their views—and perhaps use—of this type of palliative care.
The survey study, which was partially funded by NIA’s Claude D. Pepper Older Americans Independence Center at Duke University and led by Kimberly S. Johnson, M.D., M.H.S., found that African American participants reported less exposure to information about hospice—19 percent said they’d never heard of it—compared to their white counterparts (4 percent). In addition, while over 71 percent of white participants said they had heard a lot about hospice, the same degree of familiarity was true for only slightly more than 47 percent of African American participants.
“These findings are not entirely surprising,” explains Johnson. “African Americans have been historically underrepresented in hospice, and previous studies have similarly discovered that African Americans know less about hospice than whites. However, we were surprised to find that such a large proportion of African Americans in our sample (almost one-fifth) had not even heard of hospice given how common hospice care is throughout the United States.”
Investigators found that participants who were more familiar with hospice had more positive beliefs and attitudes about some aspects of hospice care. For example, if facing death, both African Americans and whites who reported greater exposure to information about hospice were more likely to agree that they would want hospice care. Researchers also identified differences between the views of African American and white participants regardless of participants’ familiarity with hospice. With increasing exposure to information about hospice, African American participants were more likely to disagree with the statement, “I wouldn’t need hospice if I were dying because my family would take care of me.” Among white participants, responses to this statement were not related to the degree of exposure to information about hospice.
White participants who reported greater exposure to information about hospice were more likely to disagree with the statement, “hospice care means you get no treatment,” compared to African American participants with a similar exposure. The researchers think a cultural difference might be at the root of a common misconception among African American participants that people in hospice do not receive any treatment. Participants may define treatment as a cure for a disease rather than comfort care. The quality of formal hospice information that African American participants received in the past along with what they heard from families who used hospice may also contribute to their misapprehension.
“This research supports the need for educational programs especially designed for underrepresented populations that will dispel myths about hospice and provide them with the information necessary to make informed choices about end-of-life care,” concludes Johnson.
Johnson and her team continue to explore how culture influences end-of-life decisions, including the choice to use hospice. She plans to use findings from her research to develop educational programs that will address knowledge gaps and disparities in this final stage of care.
If you are looking for general information about end-of-life care, NIA has a publication that can help—End of Life: Helping With Comfort and Care, www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care.