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Barriers to Quality End-of-Life Care for Latinos

Hospice Health Care Professionals’ Perspective

Cruz-Oliver, Dulce M. MD, CMD; Sanchez-Reilly, Sandra MD, FAAHPM

Author Information
Journal of Hospice & Palliative Nursing: December 2016 - Volume 18 - Issue 6 - p 505-511
doi: 10.1097/NJH.0000000000000277
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Abstract

Currently, there are an increasing number of elders from diverse ethnic backgrounds. Forty percent of the US population older than 65 years is projected to be from one of the ethnic minorities (African Americans, Hispanics, Asian Pacific Islanders, Native Americans, Alaska Natives) by 2050.1 This increasingly diverse population of older adults requires health care providers (HCPs) to consider and respect cultural needs at every point of contact throughout the health care system. Despite improvements in the overall health of the American people, ethnic minorities suffer disproportionate burden of illness and premature death, leading to health disparity.2 Latin Americans are one of the largest minority groups, and as such, they are at high risk for health disparity especially at end of life (EOL).3,4 Some patients and providers have more difficulty talking about death and dying than others do. For example, immigrant and underserved populations experience low health literacy and language barriers that complicate EOL discussion.5 Language barriers and limited knowledge of cultural factors likely impact communication in EOL care options.6

To explore ways to deliver EOL care to this population, a literature review was conducted7 that identified gaps in EOL care delivery, including the unknown need and acceptance of the hospice concept among Latinos, which is the gap chosen to investigate. Latino elders face EOL decisions with family support and are receptive toward hospice if educated.7 By using the focus groups design, needs assessment educational material was developed to further promote awareness of EOL care to the informal caregivers and patients in the Latino population. This report summarizes the focus group findings. The objective of this study is to understand the perceptions of HCP of what are the barriers affecting the utilization of hospice in the Latino population and what solutions may help elicit their EOL care preferences.

METHODS

Study Design

Focus groups of HCPs were conducted at 2 hospice agencies located in different geographic regions of the United States to compare views on Latino EOL care.

Study Participants

To be eligible for study participation, HCPs had to be older than 20 years and employed at 1 of the 3 home hospice companies in St. Louis, Missouri, and San Antonio, Texas. This study used HCPs to better understand their perceptions of the needs of Latino caregivers and patients at EOL. Although this was a convenience sample, it is important to note that in San Antonio, Texas, 63.2% of the population is composed of individuals of Hispanic or Latino origin, whereas in St. Louis, Missouri, 3.5% of the population is composed of individuals of Hispanic or Latino origin. This study was approved by the St. Louis University and University of Texas Health Science Center in San Antonio institutional review boards.

Study Sites

This study was carried out on 2 HCP groups from VITAS hospice in Texas and 1 from Alternative Hospice in Missouri.

Study Procedures

The focus groups were conducted from February to May 2012. Each group session was conducted in a private room and lasted 1.5 hours. The recruitment statement was read to participants before start of meeting to assure participants that their responses would be kept confidential. A hardcopy was distributed for their information to those HCPs who agreed to participate. Each participant was asked to complete a descriptive survey that included their ethnicity, age (>50 years, yes/no), profession, and Spanish fluency (yes/no). All HCPs from each of the groups were asked to share their personal and professional perspectives on barriers to quality EOL care, as well as potential resources for improving EOL care for Latinos. The first question, which consisted of 3 parts, related to barriers to quality EOL care, including gaps in services and cultural and/or religious issues: “List common (a) diagnosis and (b) symptoms you see among Latino patients; and (c) List common issues experienced by Latino family members of end of life patients.” The next question asked related to resources for improving EOL for Latinos (eg, support groups, interpreter resources, pastoral care, speakers with expertise, agencies, and Web sites). Two Texas groups were facilitated by a postgraduate student in geriatrics (J.G.) and 1 group was facilitated by a physician (D.M.C.O.) in Missouri. Each facilitator took field notes related to the participants' responses and shared them with the other members of the research team. All sessions were recorded and transcribed verbatim by a third party (a medical student) and checked for accuracy by a member of the research team, who listened to the audiotaped focus group interviews and verified the transcription.

Data Analysis

Focus groups were recorded, transcribed verbatim, and analyzed using qualitative methods. Characteristics of participants were compared according to their working place (Missouri versus Texas) and the barriers and solutions reported were analyzed using descriptive statistics. For coding and analysis purposes, the authors entered the transcripts into Atlas.ti version 6.2. To ensure rigor in the data analysis a research team then coded the transcripts independently. One member of the coding team was the postgraduate student (J.G,) who was also the focus group moderator in Texas. The second coder was a psychologist (M.T.) and the third coder was a physician (S.S.R.), both with research expertise in qualitative methods. Open coding strategy was used for content analysis of the responses to the questions asked in the focus group. Detailed themes emerged during team meetings, in which the transcripts coded text were discussed in relation to each other. Consensus was reached by the 3 members of the research team (student, psychologist, and physician). After a final review by the team, the identified themes were categorized under barriers and possible solutions. Credibility of data collection and analysis process was enhanced by (1) careful documentation and organized record keeping and (2) an interdisciplinary research team analyzing the data independently and reaching consensus.

RESULTS

Sample Characteristics

Subjects recruited for this study were HCP of home hospice agencies in 2 different study sites (Table). A total of 45 HCPs participated in this study. There were 2 HCP groups from VITAS hospice in Texas (n = 9, 12) and 1 from Alternative Hospice in Missouri (n = 24). Texas HCPs were predominantly Latino/Spanish-speaking, whereas Missouri HCPs were white, non-Spanish fluent (P = .001). The first group from VITAS consisted mostly of white HCPs, whereas the second group was a specialized group (La Esperanza Eterna Team of VITAS hospice) made up mainly of Hispanic and Spanish-speaking HCPs who were also familiar with Latino traditions and culture. Most HCPs who participated in the study were older than 50 years (71.4%). The interdisciplinary teams of HCPs had similar distributions of professions, consisting mainly of nurses and certified nursing assistants (Figure). When comparing hospices, it was evident that the groups had similar distributions of health care professions. Both nurses (38.1%) and certified nursing assistants (38.1%) made up most of HCPs. Licensed social workers and chaplains both made up the remaining 19% of the group. Physicians were also included in the study and incorporated 4.8% of the total group.

Figure.
Figure.:
Breakdown of health care professionals. RN, registered nurse; CNA, certified nursing aid; LCSW, licensed clinical social worker; MD, medical doctor.
TABLE
TABLE:
Demographic Characteristics of the Health Care Professionals (HCPs)

These 2 hospices that participated in the study included a predominantly elderly Latino patient population. Socioeconomically the patients identified as being middle class. Common chronic end-stage diseases experienced by the hospice patients were Alzheimer disease, diabetes, and malignancy.

Barriers to Quality EOL Care for Latinos

In ascending order, 3 main themes were identified: (1) language (“Latinos expect that HCPs speak enough Spanish to communicate”), (2) religion (“Latinos are mostly Catholics, faith is important”), and (3) family culture (“Latinos expect you to accept hospitality,” “families are huge”).

Language

One important barrier is language, such as that hospice was not easily translated in Spanish and many patients thought it meant a location, not a service. Also importantly, because of language barriers, this fostered distrust between the patient and the HCP.

Nurse's note from initial assessment of a patient from Brazil noted that he was upset when the hospital team mentioned the word hospice, then when she explored that further, she found that the word hospice means insane asylum […] therefore, when talking about our services to this patient we should use the word palliative, not hospice.

Once I saw a patient with liver and kidney failure from El Salvador and family did not speak English, we used a translator. Initially the issue with this family was trust. We had difficult time with what their liked or disliked and they would ask ‘why are you asking this?' Then after we build rapport and trust that was not a problem.

Another important barrier found was lack of education and that most of hospice individuals and families were not aware of what hospice was and had difficulty understanding the hospice benefit because of not having personal experience in this or having the educational background.

Many times the caregiver does not understand fully the condition of their loved one and pretend to continue their normal life, not following our recommendations and that is detrimental to the patient (e.g. they fall). That is when caregiver education enters into play.

If the family member has caregiver stress we orient them about hospice services of respite care and/or chore worker services to help with housekeeping and personal care of patient.

Religion

The second commonly encountered barrier was religion. Culture in the Latino population plays a significant role in that it influences the family life, religion, and beliefs in EOL care. The belief in miracles and strong influences by Catholic priests who may not fully comprehend the patient's medical condition may lead the family to uphold false hope. Furthermore, the family may not want to acknowledge the dying process in hopes for a miracle.

They have a miraculous mentality, understanding that in a way God can heal them and then they do not accept death as normal part of life […] one can help them to detach from the miraculous mentality, which is a resistance.

I do not have a cultural understanding of their meaning of death, dying, grieving and all of that […] suffering is part of penance or the way to heaven, so pain management can be tricky because they do not necessarily want to take all the suffering away.

Family Culture

Third, many Latinos have large families that also present a dilemma in causing difficulty in arranging family meetings and obtaining a general agreement and understanding of their loved one's disease and dying process. Latino families take pride in being able to care for their loved ones at home so placement with a hospice agency or nursing home may be seen in a negative manner. Hospitality is an important value, and it entails making visitors feel welcomed and well attended in their needs. That is why they may offer beverage or food to visitors and some may get offended if refused.

Sometimes we get the idea that the stereotype of Latino people is that they are integrated in their faith, generally Catholic, and very connected with the family and that may not be the case all time. That does not determine their meaning, value and purpose in life.

I think that each individual will have similar traditions when you enter their home, common courtesies that they think you know and we don't […] There are underlying expectations, sometimes they tell us, sometimes they don't. They expect you to accept hospitality.

Potential Solutions to Quality EOL Care for Latinos

Participants identified several ways to overcome some of these barriers to increase education on hospice and EOL care and decrease caregiver burden. The top 3 themes under potential solutions identified included (1) education in Spanish to families, (2) community religious leaders (given the importance of faith), and (3) the use of media to bring the concept of hospice to Latino homes. Other important resources for improving EOL care include pairing both Latino professional health care workers with Latino patients to maintain uniformity in culture. It was noted that Latino patients typically prefer HCPs who have similar ethnic backgrounds.

Education

  • a. Educate HCPs

Cultural education and sensitivity training for non-Latino health care workers were also found to be important in maximizing patient's trust and comfort. Both Latino and non-Latino HCPs would benefit in better understanding patient's health care decisions that are culturally influenced. This is maximized by a team approach of exploring patient and families' preferences and subsequently introducing hospice care.

You have to ask questions, those questions about death and dying, what the family understand about death and dying, those background questions are really important because if we do something that is tabu or spiritually/culturally unacceptable, that is going to impact the service we provide.

  • b. Educate families

When we enroll patients there is a part where we ask, do you need a translator? Do you speak a different language? […] my first question to them is what do you know about hospice? That gives the opportunity to use the journey book to convey that these are things that happen, these are things that concerns us as healthcare workers, etc.

Increasing personal contact time with patient and caregiver increased patient trust and strengthened their relationship to the point of overcoming the language barrier. “One time we had a patient family member recording phrases for us in the patient's language so that we could say it and provide comfort to that patient.”

Community Leaders

Another area we can focus on in the community is to use current religious and civic resources for patient support.

There are minister alliances that focus specifically for Latino community as well as there is a clinical service that offers medical services to Latinos […] With the patient's permission we may contact their religious leader for further support.

If they live in communities in the city, many times there might be a church that they all go to and there may be other resources out of that church.

There are different societies and we have several different Latin American societies in this city […] if you ever have a Latino patient you can look up that society and get more support for that person […] state agencies should provide support and orientation to patients and their families because without a good caregiver, hospice can visit every day but the patient will not have a quality of life”

Use of Media

Further interventions could be an increase in the implementation of educational materials on EOL for community leaders, Catholic priests, and chaplains so that they may be better informed to educate families and patients on the dying process and hospice services. Promotion of EOL awareness via culturally appropriate telenovelas, printed manuals, and online materials is another option. A telenovela is usually a television show that narrates stories of a few people intertwined into a dramatic plot; unlike soap operas, telenovelas are designed with an ending and aims to transmit sociocultural messages.

DISCUSSION

The present study used content analysis to explore issues related to Latino EOL care from the perspectives of 45 hospice staff. The content analysis identified 3 main barrier themes: language, religion, and family culture; and 3 potential solution themes: family education in Spanish and use of community leaders and use of the media to bring up EOL care concept. Similar to this study's findings, the focus group study of Born and colleagues8 encountered 4 barriers that affect the Latino population in their underutilization of hospice: lack of awareness of hospice services, a prohibitive cost of care, language barriers, and mistrust of the health care system. Moreover, their research revealed that hospice care philosophy was found to be in congruence with the EOL care needs of African American and Latino populations.8 Dobbs et al,9 in their focus group of nursing home aids (certified nursing aids), identified among their themes one that included culture, religion, and sex influences of resident pain care by certified nursing aids. The preference of having same sex among female Latino and black residents was reported.9 Another study interviewed 46 providers of Latinos within a public safety net of the health care system that revealed similar barriers to our study, including sociocultural patient and family factors. However, these authors added the health care setting challenges, like teaching institution and time constraints, lack of EOL care resources, and lack of effective ambulatory setting.5 They concluded that universal strategies improve communication by asking patients and family members what they already know about the likelihood of dying, using simple language, encouraging questions, respecting patients' wishes, and using the teach-back technique to confirm patients' understanding.5

On the other hand, when caregivers for older terminally ill Latinos were interviewed, they identified 5 challenges while caring for their loved one, including low education, low income, geographical challenges, language, and the inability to hire additional assistance.10 Another qualitative study using interviews of 30 Latino and white cancer bereaved hospice family caregivers demonstrated poor hospice knowledge, familial decision making, denial and secrecy, and more satisfaction with hospice service among Latino as compared with white carers.11

Carrion and Nedjat-Haiem10 concluded with 5 implications for clinicians to assess Latino caregivers' needs of which some are in accordance with the solutions identified in this current study (education and community leaders). The implications include: (1) the understanding of expectations for family members regarding caregiving within the context of their cultural norms; (2) the usage of language-appropriate and culturally-appropriate tools to facilitate the utilization of services among Latino caregivers; (3) and hospice organizations that can utilize the existing informal networks within the Latino community to provide volunteer training in Spanish.10 The authors10 added that this education can be provided by family caregivers who share their experiences with members of the Latino community via public education, health fairs, church events, and radio programs along with other arenas within the Hispanic community. If caregivers are provided with the opportunity to discuss the services that they have received, as well as the intricacies of the process, they will demystify hospice services and increase accessibility.10

One novel approach identified by this currently study's HCP was the use of media to promote hospice care, specifically by use of the telenovela. Latinos are well known for liking telenovelas as per Latino channel ratings.12Telenovelas are usually dramatic stories that aim to transmit sociocultural messages; they are part of the Latino culture and very popular to share among families and discuss crucial topics.13,14 A literature review revealed that 3 studies explored ways to influence Latino attitudes toward an acceptance of palliative care services.15 Whether it was an education forum16, a focus group,17 or a video-based18 intervention, all 3 demonstrated change in attitudes among participants. Specifically, Volandes et al18 performed a video-based educational intervention among 104 Latino patients in Boston to decrease educational barriers for advance care planning with diagnosis of advanced dementia. Prevideo preferences for care were associated with educational level but not with national origin, religion, or any of the other variables. Overall, postvideo results showed that more (75%) subjects preferred comfort care compared with 40% in the prevideo results and this influenced mainly the 41% that initially wanted life-prolonging care (postvideo were 8%). After the video, differences in preferences based on educational level disappeared.18 Creating a video using the format of telenovela may be a useful way to reach Latinos.

Implications

This study contributes to the field by highlighting the challenges of EOL care for Latino elders and how they may be overcome by means of education and intervention for health care workers, patients, and family caregivers. Health care professionals who work with Hispanic patients and caregivers for persons with advanced diseases are in a prime position to improve the quality of life and death. Professionals working in different settings must possess knowledge and skills to understand, intervene, and educate. Evidence-based interventions are needed to facilitate and improve EOL care among a growing number of Latino caregivers and Latino older adults. Thus, they must be culturally specific interventions that may prove beneficial and help patients and caregivers to access resources and alleviate the stress associated with caregiving.19

Based on this study's findings, these important barriers can be overcome to advance education on hospice and EOL care to the Hispanic community. A lack of education and differences in cultural beliefs can lead to Hispanic caregivers not enrolling their loved ones in hospice and pursuing aggressive care that can be detrimental during EOL. To prevent this, it is important for hospice agencies and personnel to continue to target the growing Hispanic population and promote EOL awareness and hospice. Hispanic hospice social workers, chaplains, and nurses can be invaluable resources for physicians, the Hispanic patient, and their caregivers by continuing the psychosocial and spiritual support that families and patients need during EOL discussions.

The results of this study may inform future quantitative research in Latino community by using Spanish-language culturally appropriate media-based interventions and have a positive impact on sponsoring quality EOL care and hospice education. Promoting Latino ideals of family-centered care, compassionate care, and focus on patient's wishes can appeal to many Latino caregivers and their families. It is imperative to continue dispensing culturally sensitive hospice educational materials to the Hispanic community such as in churches and community centers in surrounding states and cities. By doing so, the mistrust in health care and language barriers may be broken down over time and allow for improved education and participation in EOL care and hospice.

Although the present findings show the importance of the unique perspectives that hospice staff have in the EOL experience of Latino elders, 3 study limitations are recognized. First, this was a convenience sample of health care workers; however, 3 different sites in 2 different states were used to obtain a broad perspective. The perspective of patients and family members in conjunction with the views of HCP needs to be explored to strengthen this research. Second, the sample did not include other ethnicities (ie, African Americans or Asian-Americans) that may have contributed their perspective while caring for Latino hospice patients. Third, one of the locations had a smaller proportion of Latino individuals in the population. However, based on the results, this did not preclude their exposure to Latino patients and broadened the sample of HCP.

In conclusion, hospice HCPs described potential solutions to improve Hispanic EOL care, including educational interventions by use of media disseminated via community leaders targeting not only preferred language but also religion and cultural preferences. Additional research related to specific needs of older Latino family caregivers of terminally ill individuals and the interventions for EOL care is needed and is of critical importance to the field of gerontology and geriatrics.

Acknowledgment

The authors thank the participants in the Alternative Hospice of St Louis, Missouri, and VITAS hospice in San Antonio, Texas. The authors also thank Melissa Talamantes, Dr Jesus R. Ortiz, and Dr Roberto Gonzalez for gathering, transcribing and analyzing data.

References

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Keywords:

EOL care; focus group; health care providers; Hispanic; hospice; Latinos

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