United States.- Gerardo Fernandez (Alianza News)– As the Hispanic population continues to grow in the United States– and grow older, so do their needs and problems. Without changes, aging Latinos are reaching end-of-life 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. Latinos, the largest minority in the United States, are not using these services for many reasons. But why exactly?
“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 US-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,’ and even when that might be true, these are only two aspects of the issue,” said Silvia Austerlic, an Argentinian immigrant, Bereavement Coordinator and Outreach and Cultural Liaison of the Hospice of Santa Cruz County. “(Service providers) don’t take their time in analyzing how to present these services.
We have to admit that this is a difficult issue to discuss, that frightens us and many believe it is even disrespectful to do so. But it is necessary to get informed about these issues,” continued Austerlic, who constantly gives presentations to the community and has to introduce hospice and palliative services. “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.”
Less than 10 percent of hospice patients are Latinos, making them the lowest ethnic group to use hospice programs. Also, a similar percentage has not announced or written down their death wishes, thus leaving behind not only emotional and spiritual scars, but also financial.
“There are many access barriers (that prevent Latinos from using Hospice services), among them, 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,” said Silvia Austerlic, Bereavement Coordinator and Outreach and Cultural Liaison of the Hospice of Santa Cruz County.
The National Hospice and Palliative Care Organization (NHPCO) agrees. In the 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 (attending families in need of palliative care), the more humble it makes me,” said VJ Periyakoil, MD, Clinical Associate Professor of Medicine and Director at the Standord Palliative Care and Stanford Hospice.
“Culture is not just about ethnicity, each family, even a group within the family, has different cultures, almost a microcosm,” said Periyakoil.
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.
On the same regard, Dr. Kreling, who studied the diversity within the Latino population, agrees, “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 On Lok Lifeways, believes that the 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 a recent survey by the California Healthcare Foundation (CHCF), 80 percent of people would like to talk to a doctor about end-of-life issues, yet only seven percent of them have already done so. Nonetheless, in 2011, close to 1.7 million people received this care, and 44 percent of all deaths in the country happened under a hospice program care, according to NHPCO.
Non-Latinos have easier access to information about hospice care than Latinos. According to NHPCO, Latinos make a hospice decision “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.
“It is all covered by Medicare, Medi-Cal, 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, and can even take place at home.
“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.”
Hospice cares for terminally ill patients with need of palliative care, to treat symptoms to control or relieve the pain, and to make the end of life more comfortable. Hospice 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 through a New America Media Palliative Care Fellowship, sponsored by the California Health Care Foundation.