In rural East Tennessee, the Appalachian culture has predominantly affected the way that end of life care for terminally ill patients has been provided. Healthcare providers do not receive culturally sensitive education and skills to help them understand the culturally differences present in the Latino population. The United States population demographics is changing. According to Blewett, Smaida, Fuentes, and Zuehike (2003) Latinos represent nearly 13% of the U.S. population, surpassing African-Americans as the nation's largest racial/ethnic group.

In East Tennessee, Washington County is one of the largest counties. According to P. B. Masters of the Washington County Tennessee Health Department, the city of Johnson City has a population of approximately 76,000, and Washington County an additional 46,000 people, with an estimated population of 4,000-5,000 migrant workers here in the Johnson City/Washington County area during peak farm season (personal communication, October 12, 2008). As these migrant workers serve these farming communities, they become ill with various acute, chronic and terminal illnesses. Their unique culture has different beliefs about end of life care. These differences include patient healthcare decisions made by the family as a whole, and not the patient by themselves. Therefore, there are several misconceptions and beliefs held by front line healthcare providers that are often fueled by their stereotyping and ignorance of cultural differences. As a result of these misconceptions and beliefs, a major impact on the quality of care of the terminally ill Latino patient may occur. This lack of culturally sensitivity could cause a significant negative impact on the quality of emotional, social, spiritual and even physical support given by the healthcare provider. This research investigated whether healthcare providers in Washington County, Tennessee are providing culturally sensitive end of life care to the area's Latino population.

The findings and conclusions of this qualitative study could refute or validate whether healthcare providers that are giving end of life care to the Latino population of the rural region of Washington County, Tennessee are doing so with regards to the beliefs, customs and traditions of the Latino culture rather than the beliefs customs and traditions of the majority culture. By sharing these findings, the general physical, emotional, social/spiritual, and mental healthcare needs of the Latino population could be addressed, and end of life care for the Latino patient could be improved. These findings could also serve as a springboard for other communities that are also challenged with the cultural differences and needs of the Latino patient and their families.

The following questions will guide the research:

1. What are the cultural beliefs, customs and traditions regarding end of life care of the Latino residents of Washington County, Tennessee and how are these beliefs, customs, and traditions exhibited during the care of Latino patients facing terminal illness and death?

2. By incorporating knowledge of the Latino culture regarding beliefs, traditions and customs of end of life and death can a significant impact be made on the quality of care that the terminally ill Latino patient receives in Washington County, Tennessee?

According to U.S. Department of Health and Human Services as quoted in Larson (2001), the migrant farm worker has one of the highest morbidity and mortality rates in the United States. In 2000, their average life expectancy was 49 years, compared to the national average of 77.3 years. Many health problems suffered by farm workers are related to their occupation and substandard, overcrowded conditions, including dehydration, communicable disease, heat stroke, parasitic infections, digestive disorders, depression, muskoskeletal problems, respiratory problems and cancer (Larson, 2001).

According to the American Cancer Society (2006), an estimated 82,080 Latinos will be diagnosed with cancer in 2006, and approximately 12,232 will die from cancer. Latinos have higher morbidity rates and higher mortality rates from cancers of the stomach, liver, uterine, cervix, and gallbladder. According to a study by Morantz & Torrey (2003), these rates reflect greater exposure to specific infectious agents and lower rates of screening for cervical cancer, as well as dietary and possible genetic factors. Johnson, Kuchibhatala, Sloane, Tanis, Galanos, & Tulsky (2005) found that Latinos with terminal illness are underrepresented in Hospice care. It was not known whether this difference was due to cultural preferences for place of death or decreased access to hospice.

In summary literature concludes that Latinos in the U.S. feel that there is not always regard for their cultural practices, beliefs or ceremonies during end of life care. It was further noted that many Latinos recognize a feeling of nurturing and caring when their healthcare providers speak Spanish when treating them.

Ethnography was selected for this study. An ethnographic research design includes “the art and science of describing a group and its culture” (Bailey, 1997 p.138). The constructs of the culture of Latino patients is studied to first determine what important rituals, traditions and beliefs surround the patient and families dealing with end of life issues. These constructs include issues such as treatment, pain control and religious rites. Because the researcher or their representative served as this ethnography's data collection instrument, data were collected in a manner that assured strict compliance with Health Information Portability and Accountability Act (HIPAA). HIPPA guidelines regarding patient confidentiality and privacy were followed and privacy was maintained.

The study's sample represents a purposeful sampling of Latino patients receiving end-of-life care for various terminal illnesses. Babbie (2008) described a purposeful sample as “a type of sampling in which the units to be observed are selected on the basis of the researcher's judgment about which ones will be the most useful or representative” (p. 520). The researchers selected twenty two patients (fourteen male and eight female) from a Blood and Hematology Center; eleven patients (seven male and four female) from a university based Cancer Center and five patients from Washington County Tennessee that were enrolled in outpatient care with physicians other than those practicing in the Blood and Hematology Center or the university based Cancer Center. An interpreter was present during data collection and she assisted with obtaining informed consent from the study's participants. She was familiar with the study, a breast cancer survivor, and has chaired a cancer support group for Latino patients in Johnson City/Washington County, Tennessee.

Because one of the study's authors is an Oncology Certified Nurse, it was relatively easy to fit into the culture of the study's institution and oncology centers. During the data collection encounters, an interpreter well-known to the patients and their families because she lives in one of the largest Latino areas in Washington County introduced the researcher as a nurse who was interested in improving the end of life care for all of the terminally ill Latino patients in Washington County, Tennessee. The researcher was greeted warmly by the participants as they chatted with the interpreter in his or her own language and dialect. Minerva, the interpreter and key informant, explained in detail the reason for the researcher's presence and questions. Informed consent was obtained and the patients were eager to help someone else who may be suffering from like or similar illnesses.

Fieldwork visits were set up around the dates and times that patients came into the clinics for treatment or checkup. Initially, the fieldwork consisted of observation of the clinical environment and the interaction between the providers and the patients. Interviews began as unstructured, but became structured as questions and then turned to open ended questions about the patient's specific culture and how terminal care was provided and end of life issues were addressed within the constructs of the patient's native culture. Because the interpreter was Latino and knew the specific dialects of the participants, the interpretations of the answers are more accurate and meaningful. As patients and families were asked questions centered around honoring their beliefs and culture by healthcare providers during end of life care, data concerning the study's central theme were collected.

Pacing of the interview allowed the patient and their families time to think about their feelings before answering. This additional time with each patient gave the researcher time to observe the interaction, voice inflections, and non-verbal communication during the exchange between the healthcare providers and the patients. Fieldwork notes, as well as interviews with patients and families, helped the researcher to develop a network of data that was used during the data analysis. Leaving the treatment/interview area was somewhat difficult as the researcher developed a relationship with the interpreter and the patients.

According to Lincoln & Guba (1985), data analysis is done using patterns, categories, and descriptive units as ways to describe data and to deduce causes, consequences and relationships. As the interpreter asked the questions and interpreted, the researcher took detailed field notes, and used audio- tape to record the answers. The contents of the audio tapes were transcribed into Microsoft Word documents. Transcripts of the data and field- work were read and re-read line-by-line to derive concepts related to the participants' experiences. The experiences were then coded, grouped by their self-identified cultural and/or religious group and analyzed on a case-by-case basis to look for codes, categories and themes within that individual's experiences. The experiences were compared across the information derived in the literature review to look for similarities and differences in categories. Matrices were used to organize and collapse codes into categories.

Finally, the study's data were organized by description (using index cards) to help make interpretations of the collections of individual data elements. Next, the data were grouped by phrases, sentences and paragraphs that had similarities. Categorizing the data that is consistent was the next step and then fleshing out threads of data by putting them into patterns lead to emerging themes that lead to the final product of content analysis.

In the oncology environment of the Cancer Center, it was noted that most patients interacted in English and were on a first name basis with their nurses. However, when any information about effects of treatment or changes in regimen was communicated, translation into Spanish was needed.

The interview began with the question “What is it like in your culture when a family member dies?” Follow-up questions included:

• What does the immediate family do when a family member dies?

• What do friends and relatives do when a family member dies?

• What rituals or ceremonies are done for a family member who is dying?

• Are there any differences in rituals or ceremonies for adults or children when a family member is facing death?

• What meaning is attached to the death of an infant or child?

• Are their any spiritual or religious ceremonies that are done during the patient's terminal illness or immediately following their death?

• How long does the bereavement period last for the family members?

• How does religious affiliation affect what family members do and what is expected of them?

Participants described their feelings when talking to an interpreter instead of directly with the caregiver, their experiences with death, ritual, and ceremonies involving friends, families and religious leaders.

Group participants identified themselves by their own or their parents' countries of origin, their religious affiliations, and some as belonging to the large racial/ethnic group of Latinos. They also spoke about the influence or European and Spanish colonies as well as Catholicism on their families' beliefs, ceremonies, rituals, and celebrations.

A persistent theme that emerged was that beliefs about the soul of the deceased lead families to perform rituals and ceremonies that foster passage to God, the light, or into another life. The stronger their beliefs, the more dedicated the families of the deceased are in completing the rituals and ceremonies of the religion or ethnic background. Participants did not practice some or all of their parents' or grandparents' rituals and did not know the meaning of certain rituals and ceremonies. Prayer was a consistent practice performed to ease the passage of the soul.

The beliefs of the time before death were that it was a time of preparation for death. Participants discussed the choice of visitors, preparation of the environment, and decisions to be made for a dying family member's wishes. Participants also described the practice of calling a priest for last rites when a loved one may be dying, although they might hesitate because this sacrament may somehow assure the death. Participants also described a need to do all that is necessary to keep the person alive. A Do Not Resuscitate Order (DNR) may not be signed unless the dying person is older because of their belief that older people should “gracefully accept death” (Lobar, Youngblut & Brooten, 2006, p.46). Participants also stated that no extra measures should be done for the elderly so that they “can die with dignity”(Lobar, Youngblut & Brooten, 2006, p.46). Participants do not like to discuss DNR orders because they do not want to take responsibility for pulling the plug or feeling great responsibility for the rest of the family saying that “he died because you killed him” (Lobar, Youngblut & Brooten, 2006, p.47).

None of the participants stated an affiliation with Santeria, which is a religion derived from a blend of Catholicism and folk medicine (Grossman, 1996). However, they had heard of family members who wanted to practice rituals using sacrifice, incense and perfumes. One participant noted that ceremonies and rituals using small birds, or more elaborate ceremonies using bigger animals are sometimes done in the home.

Participants discussed after death beliefs that if an infant dies, then they must be baptized as soon as possible, even if the parents have different beliefs. This ensures a safe passage for their soul. If the infant is not baptized, the soul could remain in limbo.

Participants held the belief that all souls must be sent to heaven by prayer and holding mass for the deceased. Participants discussed having several nights of mass following the death of a family member.

All of the participants in this study identified themselves as Catholic and they discussed how Catholic beliefs heavily influenced many of the beliefs, rituals and practices among their families during the dying process and after death. They also expressed a strong relationship between the living and the dead by having prayer and visits to the grave every year. Participants also discussed how healthcare providers who are not from a Catholic background do not understand the rituals and ceremonies of their families. Participants also discussed how they felt healthcare providers who did not take time to ask what their beliefs and rituals were before the family member was involved in the dying process were seen as uncaring.