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St. Paul, Minn. — Hospice Minnesota became concerned about the lack of diversity in its patient population after surveying its 69 member hospices last year. The results showed that most programs were only reaching Caucasian patients. Of those hospices that did report some diversity, director Ellie Hands says most had only one or two minority clients.
"Our providers really didn't know, how do we reach out and serve these people," Hands says. "What are the resources? And then what do we need to know? We do know that most people would prefer to die at home -- across cultures."
To address the problem, hospice officials sought advice from colleagues around the country. But they quickly found that most hospices face the same challenge. So they decided to come up with their own plan to encourage other cultures to use their services.
The organization gathered reams of information from medical journals about Hmong, Spanish and Somali populations. They also brought in professional lecturers to lead diversity training sessions for staff.
Dr. Okokon Udo, who emigrated to Minnesota from Nigeria, taught some of the sessions.
"Every culture has some need for hospice. But some cultures are not used to the American understanding of hospice," says Dr. Udo.
Udo is an assistant professor at Northwestern Health Sciences University in Bloomington. He's also the former executive director of the Center for Cross-Cultural Health. Udo says hospice's connection with high-tech, western medicine is off-putting to some cultures, which prefer a less invasive, more spiritual approach to death. Many assume that if they use hospice they still could be forced into a nursing home or a hospital where they'd recieve care from strangers who medicate them.
"Who you are surrounded by in those moments that are most crucial is a key to how you die. So that preference would be family, which is what makes it hard for some cultures to embrace hospice," Udo says. More than 80 percent of hospice patients do die in their own homes, surrounded by family. But Udo says many people don't know that. If hospice wants to attract more diverse cultures, he says it has to do a better job explaining this and how its staff can improve the dying process.
One day recently, Lesli Wiita pokes her head into Hoa Nguyen's sunny Minneapolis apartment.
"Hi. Hi sweetie," Wiita says.
Wiita is a nurse with Hospice of the Twin Cities, and works mostly with patients referred from Hennepin County Medical Center. Her team probably has the most experience with diverse cultures of any hospice in the state. Wiita became Nguyen's hospice nurse about a month ago.
"Hoa, how is your breathing?" Wiita asks.
"My breathing? I get short breaths just a little bit. Not much. When I talk a lot," Nguyen replies.
"Right. Any coughing?"
"Little bit. Yeah, I think."
Nguyen, who came to Minnesota from Vietnam, is battling a lung infection brought on by incurable tuberculosis. She's 36. She contracted TB a long time ago in her home country.
"I got TB when I was 3 years old, and I don't know why I (am) still here," she says.
Nguyen needs help from hospice because her family can't care for her. Most of her relatives still live in Vietnam. She says without hospice she probably would be in a nursing home right now.
After Wiita finishes questioning Nguyen about her health, the two women usually spend the rest of their time just talking. If Nguyen is having too much trouble breathing, she asks to be held for a while. But if she's feeling good, she tells Wiita about fleeing Vietnam, living in a Philippine refugee camp and her spiritual beliefs.
Every culture has some need for hospice. But some cultures are not used to the American understanding of hospice.
"I'm Buddhist and Catholic you know? Both my father Catholic, my mom Buddhist. I have both religion. But I still have many questions, you know? Where I'm going when I die? I have question," Nguyen says.
Wiita says hospice is all about letting people talk about the things that are important to them at the end of their lives.
"One thing we learn is it's not our agenda, and we shouldn't have an agenda," Wiita says. "We need to meet them where they're at, with their health and their belief system, and you work with that."
Not all cases are like Nguyen's, where the hospice service is so obviously welcomed by the patient. Wiita remembers a case two years ago when she helped take care of an elderly Hmong woman who was dying from cancer. The woman's son told Wiita that it was his family's role to take care of his mother's spiritual concerns about death, not hers.
"I believe he was left with the impression that I'm walking in the room going, 'Well Hi Mrs. Vang. How do you feel today about death and dying?' When in all reality from his perspective he's going, 'No. You don't walk in there and talk to my mother like that!'"
The son, Phay Vang, says he didn't realize at the time that Wiita wasn't initiating the discussions about death.
"In the culture, especially for the Hmong people, it's forbidden to talk about, 'OK, she only have only two days to live, or she have only one week to live'. It's forbidden to tell the patient," Vang says.
He says for most Hmong people, it would be more appropriate to discuss death by comparing it to closing a window or shutting a door. Eventually, after many months, Vang and Wiita figured out how to communicate. Today Vang says he's happy he used hospice.
"Because my mother was sick long enough for us to know each other. I think at the end I think almost like we become part family together. We do more good than harm to each other," he says.
Vang invited Wiita to his mother's funeral and seated her in the front row with his female relatives -- a great honor. He's also referred other people in the Hmong community to hospice. But none of his friends has followed his lead yet.
Hospice officials admit it remains a challenge to convince immigrants to give hospice a try. Only 25 percent of all Minnesotans use the service to begin with. But Dr. Okokon Udo thinks success shouldn't be measured with numbers.
"It will be in the stories that people talk about," Udo says. "When people start going, 'Without it, my mother would not have been as peaceful as she was,' those are the kinds of stories that will kind of help create a need for the service in some specific communities."
Hospice Minnesota is hoping to obtain grant money to expand its cultural diversity efforts. Officials hope that programs developed here will one day become a model for hospices around the country.