Palliative Care for Latino Patients and Their Families: Whenever We Prayed, She Wept

Division of Geriatrics, Department of Medicine, University of California, San Francisco, USA.
JAMA The Journal of the American Medical Association (Impact Factor: 35.29). 04/2009; 301(10):1047-57, E1. DOI: 10.1001/jama.2009.308
Source: PubMed


Latinos account for 15% of the US population, a proportion projected to grow to 30% by the year 2050. Although there is tremendous diversity within this community, commonalities of language, beliefs, attitudes, and behaviors unite Latinos, making them more similar than different. Differences by national origin, although important, are attenuated when immigrants come to the United States, dominated by an English-language, Anglo-centric culture. For non-Latino and non-Spanish-speaking clinicians, communication barriers and cultural misunderstandings can impede the care of dying Latino patients and their families. We present the case of a young, pregnant, Spanish-speaking woman from Central America diagnosed with a fatal leukemia. As illustrated by this case, Latino immigrants face a number of external challenges to optimal end-of-life care: (1) geographic distance as well as political and economic realities often separate patients from their valued families; (2) undocumented immigrants are frequently uninsured and fear of deportation may create a barrier to accessing health services; (3) language and literacy barriers; and (4) concerns about discrimination. Other Latino issues that may be more pronounced in end-of-life settings include cultural themes and religious and spiritual influences. We recommend that professional interpreters must be used for discussions about goals of care with Spanish-speaking patients and families or when negotiating conflict between the patient, family, and the health care team. Concrete suggestions are provided for clinicians in working with interpreters, eliciting culturally based attitudes and beliefs, and implementing universal strategies for clear health communication.

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Available from: Eliseo J Pérez-Stable, Oct 13, 2014
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    • "Those qualifying for and receiving Medicaid, for example, have lower health literacy rates than those receiving Medicare or other insurance[4]highlighting a connection between lower income status and lower health literacy. Notably, functional health literacy related to the complex sub-topic of end-of-life decision making is lacking and needs to be approached sensibly using techniques that are not only language appropriate, but also culturally attuned[5]. English literacy and numeracy barriers affect urban adults disproportionately both nationally and in New York City (NYC)[6,7]and this may be secondary to larger concentrations of immigrant populations in cities. Poor health outcomes of urban Hispanics, specifically, are linked to suboptimal health communication resulting from poor literacy coupled with the lack of services tailored to this population[[13]. "
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    ABSTRACT: This was a model of community engagement for a Hispanic population in East Harlem, New York City to assess health care decision-making processes, with a focus on end-of-life decisions, among older men and women. The design involved two senior center-based semi-structured focus groups conducted in Spanish and English followed by a series of bilingual skills-building workshops focusing on situational decision-making. All program aspects were conducted between April and June of 2013. The themes for the workshops included: "Getting the most from your pharmacist encounter;" "How to prepare for your primary care visit;" and "I am getting discharged from the hospital: what do I do?" For the two focus groups, 21 community members participated, each of whom self-identified as Hispanic or Latina/o. Ten common themes emerged from a two-stage/two coder, grounded theory-based qualitative analysis and included: Where Community Members Receive Care; General Challenges, Cultural Challenges, and Benefits of Health Care in New York City/East Harlem; Key Facilitators in Health Care Decision Making; Key Facilitators in End-of-Life Decision Making; and Perceptions of Health Care Disparity. Themes and their subcategories, discussed herein, may offer guidance for area health providers and health care delivery entities. This project served as formative, qualitative data collection for a larger scale forthcoming community assessment while offering community benefit related to health decision-making, especially end-of-life decision making, in the context of a rapidly changing urban American health care delivery landscape. Application of this synergistic community benefit and data collection model is recommended for similar and other communities in the U.S. and other countries. -- The final publication is available at
    Full-text · Article · Aug 2014 · Journal of Community Health
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    • "For example, cited cultural barriers within the African-American community include religious/spiritual value conflicts (such as the belief in a cure or the role of suffering ), distrust in the healthcare system (Bullock, 2011; Schmid et al., 2010; Shrank et al., 2005), and belief in the importance of preservation of life over quality of life (Shrank et al., 2005). Barriers for immigrants include geographical distance from family members, language differences, a lack of insurance, fear of deportation, and discrimination (Smith et al., 2009). Though a comprehensive discussion on cultural barriers to EoL care is beyond the extent of the present review, some cultural aspects related to understanding the constructs and relationship between family communication and decision making are included. "
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    ABSTRACT: Objective: Patients and families coping with a terminal illness are faced with a number of decisions over the course of their disease. The role that family communication plays in the process of decision making is an important one. The objectives for this review are to examine the current state of empirical literature on the relationship between family communication and decision making about end-of-life care, to identify gaps, and to discuss implications for policy, practice, and future research. Method: Articles were identified using systematic keyword searches within the following relevant databases: Academic Search Complete, CINAHL Plus, Communications and Mass Media Complete, ERIC, PsychINFO, MEDLINE, SocINDEX, and ProQuest. Results: The three bodies of relevant literature that emerged during this review include: (1) the importance of family communication at the end of life (EoL); (2) family decision making at the EoL; and (3) the interrelationship of communication (both within the family and with healthcare professionals) and decision making at the EoL. While the literature highlights the role of communication between medical professionals and the patient or family members, there is very little focus on the process of how family communication among the family members themselves contributes to decision making at the end of life. Significance of results: Barriers to end-of-life care are important considerations for helping patients to access timely and appropriate services. Understanding the pertinent role of family communication as it relates to the decision for EoL care is the first step in working to provide another avenue for overcoming these barriers.
    Full-text · Article · Apr 2014 · Palliative and Supportive Care
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    • "Family care systems, religious practices and traditional care perceptions may influence the use of palliative care. Cultural minorities living in Western countries may face inadequate palliative care because of language differences [9], health literacy difficulties [10] or experiences of discrimination [11,12]. The supply of palliative care may not always meet the care expectations of immigrants due to their specific cultural or religious background [13-15]. "
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    ABSTRACT: Background Our aim was to obtain a clearer picture of the relevant care experiences and care perceptions of incurably ill Turkish and Moroccan patients, their relatives and professional care providers, as well as of communication and decision-making patterns at the end of life. The ultimate objective is to improve palliative care for Turkish and Moroccan immigrants in the Netherlands, by taking account of socio-cultural factors in the guidelines for palliative care. Methods A systematic literature review was undertaken. The data sources were seventeen national and international literature databases, four Dutch journals dedicated to palliative care and 37 websites of relevant national and international organizations. All the references found were checked to see whether they met the structured inclusion criteria. Inclusion was limited to publications dealing with primary empirical research on the relationship between socio-cultural factors and the health or care situation of Turkish or Moroccan patients with an oncological or incurable disease. The selection was made by first reading the titles and abstracts and subsequently the full texts. The process of deciding which studies to include was carried out by two reviewers independently. A generic appraisal instrument was applied to assess the methodological quality. Results Fifty-seven studies were found that reported findings for the countries of origin (mainly Turkey) and the immigrant host countries (mainly the Netherlands). The central themes were experiences and perceptions of family care, professional care, end-of-life care and communication. Family care is considered a duty, even when such care becomes a severe burden for the main female family caregiver in particular. Professional hospital care is preferred by many of the patients and relatives because they are looking for a cure and security. End-of-life care is strongly influenced by the continuing hope for recovery. Relatives are often quite influential in end-of-life decisions, such as the decision to withdraw or withhold treatments. The diagnosis, prognosis and end-of-life decisions are seldom discussed with the patient, and communication about pain and mental problems is often limited. Language barriers and the dominance of the family may exacerbate communication problems. Conclusions This review confirms the view that family members of patients with a Turkish or Moroccan background have a central role in care, communication and decision making at the end of life. This, in combination with their continuing hope for the patient’s recovery may inhibit open communication between patients, relatives and professionals as partners in palliative care. This implies that organizations and professionals involved in palliative care should take patients’ socio-cultural characteristics into account and incorporate cultural sensitivity into care standards and care practices.
    Full-text · Article · Sep 2012 · BMC Palliative Care
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