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End-of-Life Care in the Hispanic Community

O’Mara, Susan K. MSN, RN, ACNS-BC; Zborovskaya, Yanina MSN, RN, NP-C

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Journal of Hospice & Palliative Nursing: February 2016 - Volume 18 - Issue 1 - p 53-59
doi: 10.1097/NJH.0000000000000210
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Abstract

A task force of the Expert Panel of Global Nursing and Health of the American Academy of Nursing, along with members of the Transcultural Nursing Society, has established standards for cultural competent care.1 These standards apply to all individuals regardless of their nationality, location, language, religion, or ethnic origin.

Robley2 suggests, “Those persons who are living with chronic, debilitating, and life-threatening illness are considered vulnerable, as are their families.” Hispanic patients with life-limiting diseases are particularly vulnerable because they encountered barriers to accessing adequate care and have had past experiences with discrimination or have felt misunderstood or disrespected by medical staff. In end-of-life (EOL) care, ethnic minorities are also likely to experience limited access to information and services, such as hospice and palliative care.3

According to the Agency for Healthcare Research and Quality,4 the ethnically diverse hospice patient is less likely to receive the right amount of emotional support, less likely to receive EOL care consistent with his/her wishes, and more likely to report poorer communication with their physicians and nurses. These are all factors in lower utilization of hospice services.

Campinha-Bacote offered a 5-component model for developing cultural competence. The 5 components of cultural competence include cultural awareness, cultural knowledge, cultural skill, cultural encounter, and cultural desire. Using this framework, a health care provider should continually strive to provide care within the cultural context of each patient.5

CULTURAL AWARENESS

In the United States, Hispanics are faced with a number of challenges that affect access to health care and utilization of health care services. These include legal status, distance from facilities, education and language barriers, economic and social consideration, and discrimination concerns. For many, these problems concerning the cultural and social determinants of health have hindered the Hispanic community.6

The Hispanic population is the nation’s largest minority and is expected to grow. In 2013, the Hispanic population was 17% of total US population and is expected to increase to 31% by 2060. The older Hispanic population is expected to grow faster than other ethnic minority groups. By 2030, the Hispanic population 65 years or older is projected to be the largest ethnic minority group in the United States in this age category. As indicated in the Figure, the Hispanic population consists of several groups of different origin; among them, 6 groups have populations greater than 1 million.8

Figure
Figure:
This graph shows major Hispanic subgroups and their respective percentage of the total Hispanic population in 2012.7

CULTURAL KNOWLEDGE

The Hispanic perception of illness is very important. A Hispanic individual might view the etiology of illness as evil spirits, spells, and culturally bound syndromes, which would cause them to be reluctant to seek formal traditional healing.9 Many Hispanics espouse espiritismo, a belief that the world is powered by good and evil influences. Many Hispanics view pain and suffering as a test of their faith. Often, Hispanics adopt fatalismo (a fatalistic viewpoint) that reflects an acceptance of present circumstances accompanied by a belief in miracles. Refer to Table 1 for a case study. Such view could potentially interfere with pain management and make any advanced directives discussions more difficult.6 Hispanics have disproportionately higher prevalence of conditions and risk factors than do non-Hispanics.10 The risk factors are listed in Table 2.

Table 1
Table 1:
Case Study
Table 2
Table 2:
Health Risk Factors

CULTURAL SKILL

Acculturation

Acculturation describes a process by which individuals from one culture, typically from a minority group, are modified because of contact with another culture. In practice, this could take the form of changes in language preference and the adoption of attitudes, values, customs, beliefs, and behaviors of another culture. Acculturation is sought to be multidimensional. Individuals could be traditional (hold on to original values), bicultural (embrace values in both cultures), or assimilated (embrace mostly the new value system).14

In the United States, acculturation refers to the degree of Americanization that an immigrant might undergo.15 The Latino population in the United States is highly diverse with respect to genetic ancestry, migration history, cultural practices, and acculturation. According to BusinessWire.com,16 27% of Latinos in the United States consider themselves unacculturated, 55% consider themselves as bicultural, and 18% consider themselves as acculturated. Many cultural values are so engrained in certain cultures that it is reasonable to assume that even in highly acculturated individuals such values would, at least somewhat, influence their decision-making process.17

Cultural Values

Several cultural values affect behavior in EOL care. These include role of the family, influence of religion, value of relationships, and importance of communication. The Table 3 lists relevant definitions. A prominent value in the Hispanic culture is the role of familismo, which refers to the immediate and the extended family. For Hispanics, the family is foremost. Members of the Hispanic community enjoy large extended-family networks, which they view as a source of strength. Decisions and behaviors often are based on pleasing the extended family.18 Men have a prominent role to maintain the integrity and values of the family unit. In most families, the oldest male usually holds the greatest power. Therefore, he might be a key factor in health decisions for others in the family. Women are expected to be dedicated and supportive wives and mothers, sacrifice for their children, and care for elderly relatives. Hispanics view caring for their family members as an act of love, not obligation.19

Table 3
Table 3:
Definitions

Religion and spirituality play a large role in the Hispanic culture. According to Pew Hispanic Center,20 92% of Hispanics consider themselves religious, 68% are Roman Catholic, 15% are Evangelical or Protestants, and 8% are unaffiliated with any religion. Regardless of religious association, Hispanics have a strong faith in God. The basis of any EOL decision is grounded in the church’s tenets and teachings. The emphasis is on prolonging life rather than preparing for death. Euthanasia is not allowed. The Hispanic culture incorporates the concept of fatalismo (fatalism). The quintessential of the concept is in the often-heard phrase, “si Dios quiere,” meaning if God wills it. Hispanics believe that uncertainty is an integral part of life, and the individual could do little to alter fate, and each day should be taken as it comes.21

An important Hispanic value is based on building and maintaining important interpersonal relationships. To gain the trust and confidence of the Hispanic patient, it is imperative to seek input from other family members, including the extended family to discuss important medical decisions. Understanding this is significant to patient-provider relationships.

Significant importance is placed on verbal communication. Conversants might stand very close to each other even if they are strangers. Loud voice volume, especially in more formal circumstances, might be understood as anger. Older Hispanics often do not maintain eye contact, whereas acculturated Hispanics usually do. Touch is acceptable among people of the same sex. However, it is not acceptable for men and women to touch in public. Therefore, health care providers should explain the necessity of touching during a physical examination and ask permission to do so; it is important and respectful.9

End of Life

When Hispanics are diagnosed with a terminal illness, they face many challenges. They must learn to negotiate a complicated medical health care system while making legal as well as medical decisions that determine their course of medical treatment. Language barriers often intensify because of unfamiliar terminology. Along with coping with the physical, emotional, spiritual, and financial aspects at EOL, they must also deal with decisions such as place of death and burial. A diagnosis of terminal illness is not only physically, psychologically, and emotionally devastating for a family but also financially crippling as well.22

The majority of Hispanics with a terminal illness prefer to die at home in the company of their family members. Some Hispanics believe that if they die in the hospital rather than the home setting a person’s spirit might be lost. Therefore, clinical services should include support for the patient as well as the family. In-home services might be a good option.22

Acculturated Hispanic individuals might choose to be personally informed of their terminal illness. Less acculturated ones might prefer not to know. Acculturation level, culture, and values could determine the preferred method of communication related to a serious or terminal illness to patients and families. Often, Hispanic cultural norms indicate that the spouse, eldest child, or person directing the care should be informed first of a serious illness; other immediate family members would be informed later. Health care providers who are culturally competent follow these cultural norms and allow family members to inform the patient of their diagnosis and prognosis. Family members might choose not to disclose this information as some believe that such knowledge might diminish the patient’s will to fight for his/her life.22

Hospice Care

Hospice provides care, comfort, and support for patients with life-limiting illnesses and their families. Hospice health providers work to improve the burden of terminal illness, the health symptoms of the patient, and associated pain for the duration of their illness. Hospice services decrease the number of hospital deaths.23

The lower rates of utilization of hospice services by Hispanics (5%) compared with white Americans are associated with limited knowledge of hospice programs, fear of discrimination, possible costs, low-income status, lack of health insurance, low levels of education, and language barriers. Additional factors are strong family support system and lack of clarity about palliative care and hospice function. In addition, the word hospicio in Spanish means “orphanage” or “asylum,” certainly different from its meaning in English. In addition, advantages and disadvantages to hospice care are perceived within the family framework. Therefore, Hispanic patients might prefer not to use hospice services because family members could not perform caregiving in accordance with familismo.24

The Hispanic population has unique needs and beliefs about health, disease, and terminal illness. However, these beliefs do not eliminate or nullify their need for health care or hospice services. Health care providers must recognize cultural factors and their impact on EOL decisions so they could provide culturally congruent care.

CULTURAL ENCOUNTER

Role of the Nurse

Several cultural issues involve EOL care. In order to understand cultural relevance in EOL, a cultural assessment must be administered. Data obtained from a cultural assessment would help the health care provider and the patient to formulate a mutually acceptable, culturally congruent treatment plan. However, most such tools, although comprehensive, are lengthy, prescriptive, and time consuming.25 Kleinman and Campbell’s assessment model is very simple to apply and provides a sense of the patient understanding of his/her illness.26

In the United States, EOL care is grounded in Western values. According to Leininger’s theory, to advocate for culturally congruent care, the nurse must view the patient’s perspectives of health, illness, and death through the patient’s cultural lens.27

The ethical principle of autonomy in health care is foreign to the Spanish-speaking world. Most Hispanics understand the principle of beneficence and total reliance on the provider. Therefore, advanced directives, living wills, medical power of attorney, and do-not-resuscitate-order concepts do not exist in the Spanish-speaking world. According to Quill,28 advanced care planning conversations should begin early in the disease process. Such approach would promote better symptom management and provide information to the patient to formulate informed choices. The nurse is very well positioned to advocate and facilitate advanced care planning.

Jerarquismo (respect for hierarchy) is a cultural value that compels respect of professionals, in this case health care professionals. This respect could facilitate discussions between the nurse and the patient on a variety of subjects related to end of life. Although death is not considered a taboo subject within the Hispanic community, there is a reluctance to talk about it. Cultural values are important factors when it comes to education about advanced care planning and EOL-related issues. Providing education and educational materials and listening to the patient’s hopes, concerns, and wishes enable the nurse to understand the individual’s desires for care.29

The nurse should always be aware of the decision-making process within the family system of the patient. When speaking of EOL issues with Hispanic patients, it is important that the nurse involve family and religious figures. Among Hispanics, advanced directives might be acceptable because of familismo and the family responsibility toward its members. Although in the Hispanic culture traditionally decisions are made within the family and are related to internal authority structure, the data indicate that women often lead the process of EOL decision making.30

An important issue that arises is how to present the hospice concept to a Hispanic patient who might prefer not knowing about his/her terminal prognosis and discuss it directly. This could be addressed by community outreach to raise the level of awareness about palliative care and hospice and by providing culturally competent EOL navigation of all related subjects.31

A study by Kelley et al32 of older Hispanics revealed that most preferred comfort-focused EOL care, but fewer than 25% had advanced directives or engaged in any advanced planning. The majority of older Hispanics in this study also preferred family-centered approach to decision making in the course of their illness and limited patient autonomy.

The nurse plays an indispensable role in advanced care planning of Hispanic patients. Nurses are well positioned to provide the relevant information and initiate the appropriate conversation about EOL planning. Nurses must be educated in advanced care planning and how to commence such process with Hispanic families in a culturally competent and culturally safe way.2

CULTURAL DESIRE

The American Nurses Association position paper on providing EOL care states:

Nurses need to remain in the forefront as leaders and advocates for the delivery of dignified and humane end-of-life care. They must be prepared to provide compassionate guidance and support for patients and their families in making quality-of-life choices throughout the lifespan, especially those pertaining to the end of life. They are obliged to provide comfort, relief from suffering, and, when possible, a death that is congruent with the values and desires of the dying person.33

Ethical concerns are at the core of patient advocacy. Providers should focus on the gaps in patient care services, ethical dilemmas, and the protection of patients’ rights. Advocacy helps providers, patients, and family members negotiate complex circumstances and mediate the conflicts that arise in EOL care. Hispanics have culturally based, very specific perceptions about death and the dying process. Some of these perceptions might not align with some of the values of our health care system. Providers should respect patient autonomy and social justice issues, prevent harm, and take actions to improve patients’ health and well-being.2

Perspectives of health, illness, and death must be observed through the individual’s cultural lens in order to provide culturally congruent care.34 The framework for such care should be based on the dignity and respect of the individual, integrity, cultural competence, social justice, and human rights. Ethical practice within this framework is based on a commitment to social change that addresses the systemic aspects of barriers to a patient’s self-determination.35

End-of-life care is a fundamental and basic human right. End-of-life care reaches beyond just physical care. The aim is to improve the quality of life for patients with life-limiting illness. Therefore, health care providers must address the relevant psychosocial, legal, and spiritual issues in addition to physical care.36

Recommendations to Health Care Providers

  • Not all Hispanics are the same. Although the language is common, there are subgroups originating from 20 countries, which might influence their culture, beliefs, and attitudes.
  • When talking to the patient and family about terminal illness, do not use euphemisms. Often, the meaning is lost in the translation. Simple, clear, and specific language would enable better understanding of the illness and its prognosis and facilitate better decision making about EOL care.
  • Because of respeto, patients and their families might not be assertive during their communication with health care providers. As a result, important matters or questions might not be addressed. The health care provider should ask the patient about his/her EOL concerns. In addition, such conversation provides an opportunity to discuss palliative care and hospice.
  • To develop an effective therapeutic relationship, health care providers need to gain trust and show respect to the patient and the extended family.
  • Grieving among Hispanics is considered a natural reaction and behavior. Therefore, mental health professionals might not be welcome.
  • Be aware that many Hispanics might use complementary and alternative medicine treatments offered by curanderos. Some might use medications manufactured outside the United States that might not be Food and Drug Administration approved.
  • Because of respeto, it is important to ask the patient’s permission to touch him/her physically during a physical examination.
  • The family-centeredness that characterizes the Hispanic culture is interwoven with a concern for and emphasis on the collective. This emphasis could be used as a strategy to provide educational, informational, and problem-focused services.

FINAL THOUGHTS

According to Steinstra and Chochinov,37 vulnerability in EOL care is a universal human experience that is also socially constructed, with some, such as Hispanics, experiencing more vulnerability than others because of myriad of social justice and human rights issues. These factors play a role in poor treatment outcomes and contribute to high mortality rates. Patients at end of life are vulnerable. Life-limiting disease causes physical pain, emotional suffering, and spiritual distress. All providers need to actively engage in advocacy in order to improve overall health outcomes and the quality of the dying experience. Patients with a terminal illness are vulnerable. Such vulnerability might be more prominent in patients with prior health disparities. This entails assessing patients’ needs to determine whether they have an adequate support system regarding EOL care plans. It is essential for health care providers to comprehend how to interact with vulnerable Hispanic patients and their families, especially because multiple sociocultural and system factors influence all aspects of EOL care. Treating Hispanics at their EOL stage involves the highest levels of cultural competency.

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          Keywords:

          cultural competency; end of life; Hispanic; hospice; palliative care

          © 2016 by The Hospice and Palliative Nurses Association.