Striking people of every ethnic, cultural and economic background, ALS is an equal-opportunity disease and the ways people cope with the disease can vary widely based on their cultural backgrounds.
|As director of nursing at Miami’s MDA/ALS Center, Gonzalez is a master problem-solver.
“It’s important for those of us working with people with ALS to know about different cultures,” says Ginna Gonzalez, director of nursing at the Kessenich Family MDA/ALS Center at the University of Miami.
Gonzalez recently was honored as the distinguished lecturer at the Sixth Annual Vicki Appel MDA/ALS Patient Care Conference in Houston. This “nurse of the year” honor is given to an outstanding MDA/ALS center nurse coordinator.
Gonzalez, who helped start the Kessenich center’s multidisciplinary facility in 1998, has made patient education a priority at the center by initiating a Web site, a newsletter and patient support groups. She’s a member of the National Neuromuscular Nursing Advisory Board, the Society of Gastroenterology Nurses and Associates, and the Association of Hispanic Nurses.
At the MDA/ALS center, Gonzalez sees her primary role as that of problem solver, whether it’s finding funding for in-home assistance for a person with ALS, or locating an examining room big enough to accommodate all 10 members of an extended family.
Born and educated in Bogota, Colombia, Gonzalez is particularly sensitive to the ways in which culture affects patient care.
A world of difference
|Being sensitive to different cultural values enhances the care given to people with ALS, Gonzalez says.
Each person responds uniquely to a diagnosis of ALS. But there are certain religious/cultural beliefs and values that influence behavior and, by extension, the health care picture, Gonzalez says.
Living in culturally diverse Southern Florida, Gonzalez has seen a number of such situations.
For example, many large Hispanic families insist doctors not tell patients they have ALS, in an effort to protect them. An Asian ALS patient who indicated in the emergency room he didn’t want to go on a ventilator was overruled by his family — the nucleus of decision-making in that culture.
A Jewish patient couldn’t attend an ALS support group held on a Saturday, a Jewish holy day. A Muslim patient had trouble finding home health workers willing to abide by his prohibition against wearing shoes in his home.
Cultures in which extended family and religious organizations play pivotal roles often refuse hospice services, misunderstanding what’s being offered, Gonzalez has found. African-American followers of the religion Santeria may avoid going to doctors at all, preferring to seek help in the rituals of their religion.
Some faiths and traditional healers offer “treatments” –- effective or not — to diseases that so far have stymied modern medicine, Gonzalez notes.
“I had a patient from Cuba who was treated for two weeks with flowers and chicken blood. He came back and said, ‘It didn’t work, I’m still sick.’
“But I told him, ‘At least you tried.’” The patient continued treatment at the ALS center.
Health care workers are likely to go wrong if they don’t involve family or church in decision making. They should also avoid trying to force patients to accept care they may be resisting for cultural reasons, Gonzalez says.
Becoming aware of the different ways in which culture and health care interact may result in better access to medical services for many people with ALS, she says. Also important is recruiting more minority health care providers and giving other professionals cross-cultural training.
“We need to know how people are thinking to know why they’re rejecting hospice or not going to a doctor,” she says. “As health care providers, we need to educate the patient and family according to their culture.”