A team of physicians at the San Francisco VA Medical Center and University of California, San Francisco recommends more effective use of interpreters, greater awareness of potential areas of mistrust and misunderstanding, better communication with families, and better knowledge of cultural differences in general when planning end-of-life and palliative care for Latino patients in the United States.
The recommendations, which are based on a case study and an extensive literature review, appear in a paper in the March 11, 2009 issue of the “Journal of American Medical Association.” The paper is part of an ongoing series called “Perspectives on Care at the Close of Life.”
“Latinos make up 15 percent of the U.S. population, and are projected to be at 30 percent by 2050,” notes lead author Alexander Smith, MD, MS, MPH, a staff physician at SFVAMC and an assistant professor of medicine at UCSF. “Unfortunately, however, most studies on palliative and end-of-life care have not included discussions of cultural differences between Latino and white patients and families. As a result, we don’t know very much about preferences, attitudes, and behaviors among Latino patients regarding end-of-life care.”
The paper is anchored by the case history of a young pregnant Latina woman who developed fatal leukemia and died in the hospital within a year of giving birth to a daughter. The paper recounts the challenges faced by the hospital’s palliative care service team in attempting to work with the woman and her partner on planning end-of-life care. The authors discuss what lessons health care professionals can learn from the story in light of previous research on palliative care, and how those lessons might be more widely applied.
There are a number of potential barriers to planning optimal end-of-life care for Latino patients, according to Smith. The first is language.
“Professional interpreters need to be used whenever possible, especially during advance care planning, when it’s determined who will make medical decisions on the patient’s behalf when the patient is no longer able to make them,” says Smith. The paper recommends that patients be informed of their legal right to have a trained medical interpreter.
Another challenge, says Smith, is working with patients and family members who are undocumented immigrants. “Even though health care professionals are not legally mandated to report undocumented immigrants to the government, there may be a fear of deportation that can potentially undermine the patient’s trust in physicians and other members of the health care team, and hinder discussions about end-of-life treatment,” he says.
The authors recommend that clinicians ask patients and family members about their immigration status “only when the benefits outweigh the risks” – for example, in helping plan for the care of a surviving minor child. They also suggest strategies that health care providers might use in order to establish their own trustworthiness in the eyes of patients and families.
A third potential barrier is lack of health literacy, which Smith observes is common in the United States among all ethnic and cultural groups. The authors recommend that health care providers use clear, simple, “universally comprehensible” language with all patients, regardless of origin, when discussing health care and palliative options. “This will help patients with less than an eighth grade reading level as well as those with more education,” according to Smith.
Finally, the paper urges health care providers to be aware of cultural values among Latinos – in particular, the importance of extended family. “This can be an extremely vital issue for immigrants who are separated from their families,” says Smith. He says that one potential solution would be for providers to set up a video conference, “however brief,” between the patient and the family. “At the very least, providers should set up telephone conferences,” he says. “In the case we discuss in the paper, our own team could have done more via telephone to involve the patient’s extended family, as the patient clearly wished.”
The authors conclude that, in caring for Latino patients at the end of life, “cultural factors can be adequately addressed” if clinicians communicate clearly, display “an open, interested, and respectful attitude,” and understand “Latino cultural themes at the end of life.”
Co-authors of the paper are Rebecca Sudore, MD, of SFVAMC and UCSF, and Eliseo J. Perez-Stable, MD, of UCSF.
Support for the study was provided by funds from the National Institute on Aging, the Pfizer Foundation, and the California HealthCare Foundation.
SFVAMC has the largest medical research program in the national VA system, with more than 200 research scientists, all of whom are faculty members at UCSF.