Hispanics Overcoming Barriers to Elders’ End-of-Life Care

Hispanics Overcoming Barriers to Elders’ End-of-Life Care

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SAN JOSE, Calif.--Maria Lacayo's mother was diagnosed with dementia 13 years ago, and soon after with Alzheimer's. Since then, Maria has taken care of her Mom nonstop, every day, at their home in San Mateo. Seven years ago, her caregiving demands intensified after her mother suffered a stroke.

More than once, physicians warned that Lacayo’s mother might be living her last days. Regardless, of that, Maria never thought about sending her mother to a nursing home, assisted living facility or a hospice. After the stroke, doctors said she would live only for three months.

“She is in a wheelchair, and I take care of her 100 percent. She cannot do absolutely anything, not even eat, or take her pills,” said Lacayo, who came from Nicaragua 22 years ago to the United States.

Lacayo explains that she feels remorseful and terrible when just thinking about sending her mother somewhere else. “The Lord would want me to give

Eldercare Mexican Style

My family back in Mexico has never used services like palliative or hospice care. My father's mother (Chelo) and sister (Carmen) both spent their last four and three years, respectively, on a bed in their homes before they died. They lived in Tampico, a small city in Northeast Mexico, where provincial life still differs greatly from the big city lifestyles of Mexico City.

My grandmother's neighbors were mostly her own sons and daughters, with their own respective families- as is common in Mexico. The fences were brought down and the yards were connected, giving open access to any family member to her home.

Although several nurses provided their services every now and then, family members provided care for them. We never considered taking them to a hospice, never mentioned it, never even thought about it.

What would have happened if Chelo and Carmen had been taken to specialists in palliative care? We will never know. What we know for sure, however, is that the emotional toll on the family was very heavy; conflicts and arguments were constant before and after their deaths.

--Gerardo Fernandez

my life--and patience--to continue caring for her. Even though I feel tired, we continue fighting. If we don't, they die.”

Few Latinos Use Hospice

According to the National Hospice and Palliative Care Organization (NHPCO), less than 10 percent of Latinos use hospice services.

“Sometimes it is the lack of information; we are not aware of [these services],” Lacayo said. “Therefore we don't take part in things.”

Experts agree. In a 2012 book chapter titled “Advance Directives and End-of-Life Care: a Hispanic Perspective,” Melissa Talamantes, PhD, of the University of Texas and her colleagues state, “Lack of knowledge about hospice programs” is one of the reasons for not utilizing hospice services.

They also find that Hispanics are less likely to complete advance directives, which are legal documents enabling people to state what kind of treatment they would want if they are no longer well enough to state their wishes at the end of their lives.

Talamantes and her coauthors identified common barriers in Hispanic families to filling out advance directives. For example, they explain, family members often have poor communication with physicians or care attendants. Also, spiritual beliefs may cause them to be reluctant to seek help from institutions.

Lacayo also found that language is a significant obstacle. For 10 years after her mother's diagnose, she felt alone. Hospitals rarely had staff who spoke Spanish, and did not provide much information, she said.

According to experts at Stanford University, about 15 percent of Hispanics ages 60 and older in the U.S. speaks no English. And nearly two of five Latino elders live alone.

Help en Español

But three years ago Lacayo found different sources where she could seek help, in Spanish. First she received a letter from a local organization informing her of places she could contact for health care assistance in Spanish.

In addition, the Alzheimer's Association provided her with information and support services she could access in Spanish by phone.

Also, a social worker from San Mateo County visits the Lacayos every three months, and calls them every week. Earlier this year, Maria found some respite for herself, when she started visiting a support
group offered by the Family Caregiver Alliance. There she met other Hispanic caregivers in similar situations.

Fortunately, also, her mother’s doctor and staff at the private clinic they attend do speak Spanish.

San Mateo County now sends Lacayo a shuttle to take her mother to the hospital, or to attend her support groups. This allows Maria and her mother to have a social life, to leave the house and interact with other people. They also go to the store and walk around the neighborhood.

“I love this country. We get a lot of help,” she emphasized.

Still, Lacayo accepts help only to a certain point. Although the social worker visits each week, she remains the only one to take care her of her mother.

“My mother's health is great. I bathe her every day, and have great hygiene,” Lacayo said. “One person in our support group took her mother [diagnosed with advanced dementia)] to a hospice, and died she three days after. In my case, my mother will die here with me.”

Latinos usually prefer to keep their relatives at home, although this may be changing. Lacayo stressed, though, “That would be the last thing I would do, to take her to a home.” She added that she never held a conversation about death and dying with her doctors.

More Cultural Sensitivity

Experts in aging have long documented the strong kinship networks and availability of Latinos in their extended families, which has given them more potential caregivers than typical white or some other family groups.

“In Latino families, control is kept within the family, and the patient is often 'protected' from information and the responsibility of making decisions,” said Barbara Kreling, PhD, of the American Hospice Foundation.

Kreling also suggested that there needs to be wider education within the Latino community. She encourages stronger “cultural sensitivity and diplomacy” and “the need for a trained bilingual, bicultural community member” aware of “the important role of the family in these decisions.”

Many hospices in California are launching outreach efforts targeting the Hispanic community, emphasizing the importance of the family.

“It is important to emphasize the importance of family in hospice care. Some Latinos have not heard of hospice,” says the “Latino Outreach Guide” [http://tinyurl.com/n89wn8t] from the NHPCO.

An important example of cultural awareness is the NHPCO’s own realization that the word “hospice” can be confusing for Hispanic families. Instead, the organization has found Latino’s much more open to the term “compassionate care.”

Gerardo Fernandez wrote this article for Alianza Metropolitan News through a California Healthcare Foundation journalism fellowship, a project of New America Media in collaboration with the Stanford In-reach for Successful Aging through Education Program.