University
Improving End-of-Life Care for African Americans
By Athan Bezaitis on November 18, 2009 7:33 AM
Since hospice care became a Medicare benefit nearly 25 years ago, terminally ill minorities have encountered numerous barriers in accessing its services.
These include limited knowledge and lack of familiarity with end-of-life programs as well as misconceptions of hospice.
“People often mistakenly believe hospice is a place, it’s only for cancer patients, that their families will have to pay for it or they will have to give up their doctor,” said Susan Enguidanos, the Hanson Family Trust assistant professor at the USC Davis School of Gerontology. “These are myths perpetuated by lack of access to quality information on health care in underprivileged communities.”
To overcome these barriers, Enguidanos, who also is an assistant professor of social work, teamed with Partners in Care Foundation to create an educational brochure featuring real-life stories about the experiences of African-American families in end-of-life care programs.
“These stories incorporate the language of the storytellers and carry the cultural values and imagery of the intended audience,” said W. June Simmons, president and CEO of Partners in Care. “The stories provide an opportunity for vicarious learning through the actions of others and aim to impact behavioral intentions through increasing awareness of hospice care and changing attitudes toward it.”
Developed directly from interviews with local community members, the personal reflections describe the initial misconceptions held of hospice and the oftentimes contrasting reality of service.
“This method helps others relate to and identify with the experience depicted in the story,” Enguidanos said.
One such narrative titled “A Conversation With Rev. Brent” featured the reverend, who is suffering from dementia and his wife, on their experience with hospice care once her husband was diagnosed with a terminal condition:
“… My husband’s doctor first told us about hospice because he knew that at that point, my husband couldn’t do anything for himself, and he’s getting weaker and weaker.… It is very difficult to provide care for my husband because he hasn’t been able to stand or do anything for himself for months. Hospice has someone come into our home three days a week to do my husband’s vitals, clean him up and get him up and out of bed, and that has been extremely helpful. For some of the medications my husband takes, I don’t even have to pay for them or pick them up either. We are not rich people, of course, so that helps.”
The brochure also features sidebars that highlight some of the features of hospice care such as 24-hour on-call services, an explanation of the importance of pain management and the spiritual support offered to patients and loved ones.
“Through the stories of real hospice patients and family members, paired with hospice facts and figures, we hope to improve knowledge, attitudes and beliefs about hospice care and provide seriously ill African Americans information they need to make informed decisions about end-of-life care,” Enguidanos said.
The Partners in Care Foundation is a nonprofit dedicated to “a new vision of health care” that teams with organizations, families and community leaders to change health care systems, communities and lives.
The brochure was made possible through the support of PacifiCare/United Healthcare.
TAGS: aging, community programs
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