Why Are Latinos Not Using Palliative and Hospice Care?

Image: Willie Briones

SAN JOSE, Calif.–As the Hispanic population continues to grow in the United States– and grow older–so do their needs. Without changes, aging Latinos are reaching the end of their lives unprepared spiritually or financially.

Some experts believe that the shift needs to happen from within the community, while others say it is a matter of poor cultural sensitivity from service providers.

When facing the last days of a person’s life, there are many questions, issues and problems (emotional, spiritual and economic) that have to be resolved. Hospice and palliative care services offer the relief and respite for patients and for caregivers alike.

Yet, Latinos, the largest minority in the United States, are not using these services for many reasons. But, why exactly?

Culture, Cost – and Death

“The short answer is culture–reluctance to discuss death and importance of family,” said Barbara Kreling, PhD, MPH, who has conducted studies that contrast “hospice decisions and experience” among immigrant Latinos and U.S.-born white cancer caregivers.

There are cultural and economic factors nonetheless. The word hospice, for example, is different from the word “hospicio” which, in many Latin American countries, is a place destined to aid orphan children. There might be also cultural and sociological clashes, language barriers, ideological and idiosyncratic differences.

Others believe that the main reason relies in the lack of cultural awareness from service providers when reaching out to the Hispanic population.

“People think that ‘Latinos don’t talk about these issues,’ or that ‘they take care of their own.’ Even when that might be true, these are only two aspects of the issue,” said Silvia Austerlic, who is the bereavement coordinator and outreach and cultural liaison at Hospice of Santa Cruz County.

Service providers, she said, “don’t take their time in analyzing how to present these services. We have to admit that this is a difficult issue to discuss, which frightens us. And many believe it is even disrespectful to do so. But it is necessary to get informed about these issues,” continued Austerlic, an Argentinian immigrant.

She added, “When discussing this topic with the community, when introducing what might be a cultural shift, we have to be respectful but at the same time we have to say that things are changing, that a hospice is an option.”

In California, only four percent of Medicare patients who died in hospice care were Latino, according to a 2010 survey by the California Health Care Foundation.

Also, less than 10 percent of Latinos have announced or written down their preferences about the kind of care they would want at the end of their lives. That can leaving behind many emotional and spiritual scars, but also financial.

Austerlic described key access barriers preventing many Latinos from using Hospice services, such as not knowing what the services consist of, how difficult it is to discuss these issues, and the lack of cultural awareness from many health providers when discussing these issues and presenting these services.

Culture More Than Ethnicity

In her article “Latino Families and Hospice,” Barbara Kreling, PhD, MPH, suggests that there needs to be wider education within the Latino community, and encourages for 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.”

Each ethnic group is different, and even more each subculture within that group. Each family, each case, is different, and it brings a new perspective to hospice services.

“The more I do this, the more humble it makes me,” said V.J. Periyakoil, MD, about he many years attending families in need of palliative care.

Periaykoil, who directs Stanford University’s Palliative Care Education and Training Program, continued, “Culture is not just about ethnicity, each family, even a group within the family, has different cultures, almost a microcosm.”

Each ethnic group is different, she said, and even more, each subculture within that group. Each family, each case, is different, and it brings a new perspective to hospice services.

Kreling, who studied the diversity within the Latino population, agreed, “As you know, Latinos are a diverse group both in nationality and in assimilation. We found that Latinos who were most assimilated and with higher socioeconomic status were more likely to use hospice.”

Other organizations around the Bay Area constantly provide workshops and presentations to let the community know about these options.

Johara Arduz, enrollment and outreach specialist with the San Francisco area’s On Lok Lifeways, believes the Hispanic community is not well informed, and is also reluctant to seek professional care due to economic or even immigration concerns.

“To change that we need to provide more workshops, seminars, and courses to inform people. An incentive to attend these workshops are health benefits, to learn about preventive measures, agencies, clinics, organizations and initiatives for Hispanics,” said Arduz.

Demand for hospice and palliative care services continues to increase, despite still being an issue that is not widely discussed among all ethnicities.

In the survey by the California Healthcare Foundation (CHCF), 80 percent of people said they would like to talk to a doctor about end-of-life issues, yet only seven percent of them had already done so. However nationally, according to NHPCO, in 2011, 44 percent of all deaths in the country happened in hospice care.

Non-Latinos have easier access to information about hospice care than Latinos. According to NHPCO, Latinos make a hospice decision most often “during a crisis hospitalization,” after they are referred by someone, and after they have learned that that option exists.

Another misconception about palliative care and hospice services is that people might prefer to stay away from them for fear of high costs.

How Palliative, Hospice Care Differ

“It is all covered by Medicare, Medicaid (called Medi-Cal in California) or private services. Most hospices, like ours, have a policy where they cannot refuse services if the family cannot afford it,” said Austerlic.

Hospice and palliative care services are different from curative, hospital services. “A person can even stay at home, with the care of their family members and [professional] care goes to them,” said Austerlic, “I often tell families that the best possible care at the end of a lifetime is different from the care received at a hospital.”

But also, hospice is only part of palliative care, which is meant to begin well before hospice services begin for those deemed by their doctor to be in the last six months or life or less. Palliative care is designed to treat symptoms and control pain—often relieving stress for both a patient and family caregiver. It makes the end of life more comfortable.

Palliative services provide medical, psychological, emotional and spiritual support, with the help of a social worker, advanced planning, advance directive, and chaplain services.

“There is less emphasis on the documents, and more importance on having these conversations [about dying], because if something happens to a loved one, the family does not know what to do,” said Austerlic.

The family, she continued, needs to be prepared to avoid confrontations and financial issues to be resolved. Emergency rooms, intensive care units and hospital bills might become a heavy load to the family that the loved one is leaving behind

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.

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About Gerardo Fernandez

Gerardo Fernandez, Editor, Alianza Metropolitan News, moved from his native Mexico City to Seattle, Wash., in 2000, where he produced radio in multiple languages. After moving to the Bay Area in 2007, he contributed to San Francisco’s El Tecolote and eventually became the editor, photographer and videographer for Alianza Metropolitan News of San José. He has collaborated with marketing companies and has produced content for institutions such as The National Hispanic University. Gerardo has created radio and TV commercials that have aired in Comcast, Univision, Telemundo, Estrella TV, and major radio stations. As a musician, he created and performed original lyrics and music for theater and film, and short films and documentaries. In 2008 he created the music for the short film "Pan y Tierra," winner of the Golden Lion at the Venice Film Festival, and over a dozen awards worldwide. Since 2012, he works as a Research Assistant and Multimedia Editor at Photozig, a NASA Research Park partner, out of Moffett Field.