Local organizations make Latinos comfortable with hospice

Maria Prieto, in her 39th year of marriage, had to make a decision about her husband's care. He was 86, he had liver failure, and could eat and drink only through feeding tubes and IVs.

Prieto chose hospice and welcomed nurses, a chaplain and a social worker into her home to help her and make her husband, Andres, more comfortable until he died in October.

Prieto, of Elgin, is part of a small group of Latinos who choose hospice care for their loved ones. Nationally, fewer than 6 percent of hospice patients come from her ethnic group - a statistic local organizations are trying to change.

VITAS Innovative Hospice Care - the organization that served Prieto and that works throughout Lake, Cook, DuPage and Kane counties in Illinois - has made it a priority to reach out to minority groups such as Latinos and Asian-Americans across the region. Asians and African-Americans also choose hospice less often than their white peers, according to local and national studies.

Becky Bart, a community liaison with VITAS, works exclusively within the Latino community providing awareness and education about hospice.

Bart said there are often misunderstandings about hospice. Patients can receive care from their own homes, surrounded by family - they do not need to be admitted into any facilities. And relatives concerned about fulfilling their own responsibilities toward their loved ones are not expected to give up their role.

"With hospice care they can still continue doing that," Bart said. "We can just be the additional caregiver."

Passages Hospice, founded in 2005, has been focusing on outreach to nonwhite communities for a little more than a year, hiring bilingual employees, translating brochures and marketing materials, and reaching out to community organizations.

Founder Seth Gillman said the outreach started with the Korean population on the North Side of Chicago and grew to the Latino population throughout the region. Passages now serves almost the entire state.

Gillman, too, noticed misunderstandings about hospice in ethnic communities where people look at turning to end-of-life care as giving up.

"We want to express to them in the most authentic and culturally sensitive way that it's not giving up," Gillman said. "It is actually a very courageous thing to do. It is a way to pass on your own terms and take control of your own destiny."

Mani Santiago, an admissions coordinator for Passages, works primarily at the Center Home for Hispanic Elderly in Chicago. He meets with Spanish-speaking families to answer questions about hospice care.

Just having a common language between patient and caregiver breaks down walls. Santiago said his connection as a fellow Latino helps forge even stronger bonds.

"I talk to them not as an admissions coordinator but as a son, as a brother. I talk to them as a grandson," Santiago said. "I think it's easier for them to trust me."

Passages Hospice recently announced a partnership with Hispanocare, a bilingual, bicultural health services organization based in Chicago, to join forces in getting hospice information to eligible patients and their families. Lucy Robles-Aquino, CEO of Hispanocare, said outreach is a major part of Hispanocare's operations.

Robles-Aquino said the hesitancy to choose hospice among Latinos is often a cultural bias stemming from the importance placed on taking care of one's own family.

"It is about having respect for our elders by taking care of them the best way we can," Robles-Aquino said.

But Robles-Aquino said choosing hospice is not about giving up or saying you don't want to take care of a loved one - it's about knowing when to say the situation is beyond your control and acknowledging the need for outside help.

Maria Alvarez, 96, receives hospice care from VITAS in her niece's West Dundee home. To qualify for hospice - services that are paid for by Medicare and Medicaid and often through private insurance as well - a patient generally needs to have a life expectancy of six months or less. Cancer is certainly one of the more common diseases hospice patients have, but the services are not exclusive to any one disease. Alzheimer's and dementia patients are becoming more common in hospice care, according to Gillman, the CEO of Passages.

Alvarez's niece, Maria Wosar, said she chose hospice after Alvarez's doctor recommended it. Her aunt was losing weight and could no longer shower by herself. A couple of months ago Alvarez fell, and the extra care was even more critical.

Wosar said nurses come twice a week to bathe her aunt. They brought a hospital bed that is easier to get in and out of as well as gloves, diapers and towels to help with her aunt's care. Volunteers come and visit with her, just to chat and keep her spirits up. A social worker answers any questions the family has.

"Whatever we need, they help us," Wosar said. "For me, it's a blessing."

Alvarez's condition has improved over the last seven months with hospice. She may be one of the rare patients who is discharged. In VITAS, about 3 percent of patients are discharged when their prognoses improve.

But for those who don't, hospice provides care until the end.

Maria Prieto welcomed extra care for her husband for several months last fall. Nurses helped her bathe him and keep him comfortable, and they brought medicine, cream - everything he needed. When her husband died at 3 a.m. Oct. 7, a nurse and a pastor came to be with the family, Prieto said.

"They all helped me a lot," Prieto said. "We're grateful for everything they did until the last moment when it ended."