End-of-Life Issues for Hispanic/Latinos
David Acosta, M.D. and Maribel Serrano

Cultural Context of Death  | Role of Family  |  Role of Religion  |  Medical Interventions  |  Barriers   |   Recommendations

Introduction
Over the years, there has been an increasing growth in the number of Hispanic/Latino elderly in the U.S. The population aged 65 and over in the U.S. is expected to increase 93% over the next three decades, and the U.S. Latino elderly population will increase significantly (1).  In terms of composition of the Hispanic/Latino elderly population, the largest percentage is Mexican Americans (50%), followed by Cubans (17%), Puerto Ricans (11%) and South and Central Americans (22%) (1). By 2050, it is expected that elderly Latinos will represent 15.5 % of the total U.S. elderly population compared to 7% of elderly Asians, 10.4% of elderly African Americans, and 67% of elderly whites (1). 

The rapid increase in the number and proportion of minority elders suggests the importance of recognizing and understanding the role of race or ethnicity and culture on end-of-life decisions.  Hispanic/Latinos may be especially likely to turn to their traditional norms and practices at the end of life due to their religion and/or cultural beliefs and norms which often provide them with meaning for their illnesses and guide them in making decisions regarding treatment and care options (2). 

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Cultural Context of Death
 

“The Mexican is familiar with death, jokes about it, caresses it, sleeps with it, celebrates it: 
it is one of his favorite toys and his most steadfast love…he looks at it face to face, with 
impatience, disdain of irony."                                                                             - Tellez-Giron 2007


Hispanic/Latinos have a high sense of community.  In some communities everyone is part of the dying process, before, during, and after the death.  Hispanic/Latinos view the end of life as a time when one should die with dignity and respect.  They strongly value family and community, religion and spirituality, and time and space (3). 

The spiritual, religious, and cultural values of Hispanic/Latinos often influence how death is perceived.  For most Hispanic/Latinos, death is not perceived as the end, but rather as a continuum of life.  They believe there is a duality:  the “spiritual” space and the “physical” space.  Regarding “physical” space, many Hispanic/Latinos feel they do not “belong” to the U.S. and often, when they or someone in the family dies, the family would like for the body to be returned “home” . Because of cultural and religious beliefs, the majority elect burial vs. cremation, which can add to the legal and economic aspect of dying, since transporting the body back to the country of origin can be costly and complicated.  Often times, members within the Hispanic/Latino community contribute money to help with burial expenses (3).

The relationship between the living and the dead is reflected in the majority of the beliefs and traditions about death.  Many Mexicans, in rural areas, celebrate funerals with an open casket in their own homes.  Everyone in the community is invited and contributes to the funeral and burial.  Because the majority of Hispanic/Latinos are Catholic, there are also certain Catholic traditions that are observed.  La novena is a religious tradition observed for 9 days after the burial of a loved one.  A group of people from the community get together at the deceased’s house and pray.  It is thought that by praying, the deceased’s soul will get to heaven faster (3).   An event that commemorates the dead in Mexico is known as  El Dia de los Muertos (the Day of the Dead).  On this day families honor and remember the life of a loved one who has passed away. 

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Role of Family in End of Life Decisions
Hispanic/Latinos’ lives revolve around family, both the immediate and extended family.  There is a great sense of familialism, or familismo which is the influence of strong family networks on a person’s behavior (1).  All family members are involved in every aspect of life....from birth to death.  Most important decisions are made by consensus rather than individually.  However, there are also well-established hierarchies and roles among members of the family that play an important part on decision-making.  In the majority of cases, the head of the household, usually a man, will make the main decisions.  In other cases, the oldest child is usually appointed to assist with the decision-making.  If the hierarchy is not well defined, consensus must be reached among all of the children and other family members before a decision is carried through (1). 

In regards to caring for a terminally ill family member, there is a strong feeling of filial piety and a tradition of sacrificing personal needs in the service of the family (4).  Hispanic/Latinos see the presence of family and friends as a great comfort to someone who is terminally ill.  The strength and cohesion of Hispanic/Latino families at the end of life of a family member is often demonstrated by family leaving jobs and traveling great distances in order to care for or be with a family member who is seriously ill (4).  However, it may be difficult for the family who may be geographically distant or have strong religious beliefs to make appropriate judgments about the levels of treatment the patient would wish (5).

Often times, Hispanic/Latinos feel that caring for their loved one is a privilege rather than an obligation (3).  In most cases, Latino patients prefer to be given bad news in the presence of their family.  However, in other circumstances, families may also prefer that health professionals not inform the patient about the diagnosis and prognosis of the terminal illness.  Bad news may be seen as causing more harm to the patient and families may request to withhold information from the patient to protect him or her (3,6). 

An important medical issue at the end of life is the patient’s perception of pain.  For Hispanic/Latinos, the perception of pain is multidimensional, not only physical.  Hispanic/Latinos are often seen as “stoic” but many people are not aware of the roots of this stoicism.  To be able to endure pain is part of the role of family members, both men and women. This is meant to protect other family members from suffering and worrying about them. In addition, it maintains the perception that the victim may continue fulfilling their role as provider for the family.  This is related to believing that everything is shared among the family, including pain experienced by a family member (3). 

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Role of Religion and Spirituality
Catholicism is the most common religion observed by Hispanic/Latinos.  A major source of comfort for Hispanic/ Latinos lies in spirituality and their faith in God.  God, religion, and spirituality are spoken of as essential components of the coping process for patients and families throughout every phase of life and death (4).  Religious faith plays an important role in understanding health and disease, and is a key source for the acceptance of dying and the grieving process.  In many cases, religious faith may become stronger when a family member faces a terminal illness.  Patients and families turn to God for hope and/or comfort believing that whatever happens will have meaning (3).  Prayer is a common practice among Hispanic/Latinos who find themselves or a loved one in a critical health state.  Prayer has been a way for the dying to cope with their symptoms, for the families to hear the burden of watching a loved one suffer, and to give thanks for the gift of life (4).

There are also several traditional practices within the Hispanic/Latino culture - they participate in:

• Group prayer; 
• Religious mass offerings (masses that are dedicated to God or a specific saint to ask for health and well-being); 
• Cleansings or limpias (traditional practices conducted by curanderos - traditional healers - who “clean” the body and the spirit from the disease and/or bad spirits/spells using prayer, various plants, animals, and eggs); and 
• Mandas which are saint’s offerings (where people offer material things, prayer, actions requiring a sacrifice to a specific saint in exchange for health, favors and/or miracles) (3,7).


To Roman Catholics, it is believed that individuals have an obligation to seek out medical care when necessary to preserve life.  One is obligated to preserve one’s life by means that provide some reasonable hope of benefit and is commonly available, but it is also believed that one should not be obligated to use the means that involves great effort, severe pain, or excessive expense (5). 

Often, patients and families want to keep hope, and many believe that the final decision is in the hands of God, and not the doctors.  Some of these behaviors sometimes may conflict with the current healthcare system, which promotes patient autonomy and patient confidentiality (3,6). 

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Medical Interventions and Caring for the Dying Latino Patient
Caring for the dying patient is an important time for family and friends.  For Hispanic/Latinos, many have indicated that it is important to have their loved ones in a peaceful and comforting environment when possible, but without compromising medical care.  Many also accept that loved ones might have to be hospitalized if families were unable to manage their pain or provide necessary care.  However, Hispanic/Latinos have expressed the need for care that anticipated the patient’s medical and hygiene needs and ensured freedom from pain and suffering (4).

Hispanic/Latino families feel that while in the hospital or in other healthcare facilities, patients should have many of the comforts of home, such as family care, visitors, favorite possessions, activities, and treats (4).  Hispanic/Latinos are often concern about preserving the dignity, privacy, and modesty of patients - especially female patients.   They place great emphasis on individual dignity and are reluctant to have personal care given by anyone other than an assigned family member.  It is common for Hispanic/Latinos to care for family members before seeking healthcare.  Having the ability to communicate with a patient in their own language is believed to be a key in providing comfort, medical care, spiritual and family support (4). Typically, patients start by treating themselves or their family members with home or traditional remedies and/or providers.  If traditional remedies don’t work, then they access the medical system.  If the medical system fails to work as well, they return to seek the assistance of traditional medicine practioners and, in the case of the chronic and/or terminal illnesses, religious assistance as well (3).

It is not uncommon to encounter Hispanic/Latino patients who have never heard of advance directives (see "Barriers to End-of-Life Care" below).  Even though there are subgroups, such as Mexican Americans, who do not want futile life support, more often than not those wishes have never been told to anyone.  Often times, Hispanic/Latinos assume their family members know their wishes and thus, may feel that advance directives are unnecessary (6,8).

When Hispanic/Latinos are placed in a position to decide if and what medical interventions they would like for a family member, many encounter conflict with their values. In certain circumstances, patients and families may perceive life-sustaining treatments as futile, prolonging the inevitable, undignifying and causing suffering.  It is to no surprise that family members want to assure that the dying person is pain free and treated with respect (3).  However, there are also Latino families who feel that they need to pursue life support for a family member and not “give up” on providing every measure of care possible to sustain life.  Mexican-Americans are an example of a Hispanic/Latino subgroup that are generally more positive about the use of life-support and are more likely to personally want such treatments (9).  Even under circumstances that appeared hopeless, Mexican-Americans tended to favor the use of life support.  However, many also are willing to forgo life support for their loved ones if it appears that the conditions are hopeless and/or if the patient is suffering.  Many Mexican-Americans also expect doctors to suggest or use life support only if there is hope that the patient will survive, and thus would tend to favor continuing such life support if started by the doctor (9).

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Barriers to End-of-Life Care
Hispanic/Latinos often lack culturally-sensitive health services, particularly at end of life (3).  Often times, many Hispanic/Latinos don’t share their personal cultural beliefs with clinicians, fearing their beliefs would not be respected and addressed in their care.  There is also fear related to immigration status and discrimination that can interfere with seeking help at the end of life.  For example, Latinos commonly underutilize hospice services.  In 1995, the National Hospice and Palliative Care organization reported that only 4% of Hospice patients at the national level were Hispanic/Latino.  Reasons for the lack of Hospice care include language barriers, cultural beliefs, distrust in institutions, and poor information about services (3). 

Different population groups in the U.S have not uniformly used advance directives (6).  Studies have consistently shown that there is a lower prevalence of advance directives completion for Hispanic/Latinos compared with non-Hispanic whites.  Ethnic differences in knowledge about advance directives, differences in access to healthcare and associated opportunities to complete advance directives, absence of appropriate surrogates, and concerns about placing undue burdens on surrogates have all been mentioned as potential reasons for the decrease use of advance directives among Hispanic/Latinos. Also, advance directives are often perceived as unnecessary and as too formal approach to decision making (6,10). Mexican Americans and other Latinos have a preference for making decisions as families and are often unfamiliar with advance directives as well as less receptive to their use (6,8).  This may be because they believe that the health care system controls treatment and that communicating one’s wishes to caregivers is pointless (8). 

Latinos also believe that if one plans for what they would like done if terminally ill, it will happen (3).  Mexican Americans are a particular group that prefers physicians not to discuss death and dying because they feel that doing so might be harmful to the patient (10).  Because the majority of Latinos expect to die at an advanced age, planning for death may not be started until the very late stages of illness, if at all (3). 

Studies have shown that the difference in the use of advance directives among Hispanic/Latinos is strongly related to factors such as knowledge of healthcare proxies, availability of a potential healthcare agent, beliefs about the necessity of a formally appointed healthcare agent in the presence of involved family, experience with life-prolonging technology, age, and self-perceived health status (6,10).  Latinos are often more reluctant to ask a relative or friend to serve as their healthcare agent than were whites and African Americans (10).

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Recommendations on End of Life Issues

When providing care at the end-of-life for Hispanic/Latinos, it is important to keep several keys in mind:

• Learn about the basic concepts of this population’s culture;
• Acknowledge cultural differences and similarities; 
• Provide as much education about the U.S. health system and disease processes;
• Keep an open communication channel;
• Explore patient’s beliefs and values;
• Reflect and explore your own beliefs and values and think about how this may impact your decision-making;
• Collaborate and compromise to reach the most balanced consensus on decision-making to provide the best possible care for this population (3). 


Several cross-cultural interview questions have been developed to help health care providers in these situations (see Table 1). 
 

Table 1. Cross-Cultural Interview Questions Regarding End-of-Life Issues

“Some people want to know everything about their medical condition, and others do not. What is your preference?”

“Do you prefer to make medical decisions about future tests or treatments for yourself, or would you prefer that someone else make them for you?”

To patients who request that the physician discuss their condition with family members:  “Would you be more comfortable if I spoke with your (brother, son, daughter) alone, or would you like to be present?”  If the patient chooses not to be present: “If you change your mind at any point and would like more information, please let me know. I will answer any questions you have.”

When discussing medical issues with family members, particularly through a translator, it is often helpful to confirm their understanding: “I want to be sure that I am explaining your mother’s treatment options accurately. Could you explain to me what you understand about your mother’s condition and the treatment that we are recommending?”

“Is there anything that would be helpful for me to know about how your family/community/religious faith views serious illness and treatment?”

“Sometimes people are uncomfortable discussing these issues with a doctor who is of a different race or cultural background. Are you comfortable with me treating you? Will you please let me know if there is anything about your background that would be helpful for me to know in working with you or your (mother, father, sister, brother)?”

Information from references 6, 11, 12,13

Many Hispanic/Latino families are unaware of advance directives or the details of hospice care. These materials are now available in Spanish, and there are now Hispanic agencies that provide hospice care with the help of trained Hispanic/Latino workers who speak Spanish and understand the culture, traditions and customs. 

It is important to provide educational materials in Spanish, and have Spanish-speaking employees to ascertain the needs of patients and families (4).  Some agencies have the availability of health educators known as promotoras. 
Physicians should also take the initiative in conducting advance care planning.  While respecting cultural diversity, physicians should try to persuade all patients to perform advance care planning and should take simple steps to facilitate the process.   For example, physicians should provide educational materials about advance care planning and allot time to discuss it during patient visits.  In the discussions, physicians should try to elicit patient’s hopes, fears, and wishes about treatment and outcome (8). They should also anticipate and address possible misconceptions, ascertain that educational materials read at the level and in the preferred language of patients, and include family members in discussions to the extent that patients wish (8). Promotoras may be very helpful in this endeavor.

The health care provider's relationship and partnership with his or her patients and their families provides unique insight into their values, spirituality, and relationship dynamics, and may be especially helpful at the end of life. By taking the time to elicit and respect cultural preferences regarding disclosure, advance planning, and decisional processes that relate to seriously ill patients, health care providers can provide culturally sensitive end-of-life care.

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1. Molina, Marilyn and Carlos W. Molina (2001).  Health Issues in the Latino Community.  San Francisco: Josey-Bass, 2001; p157-158.

2. Kwak J, Haley WE (2005).  Current research findings on end-of-life decision making among racially or ethnically diverse groups. The Gerontologist 2005; 45: 634-641.

3. Tellez-Giron P (2007). Providing culturally sensitive end-of-life care for the Latino/a community. Wisconsin Medical Journal 2007;106(7): 402-406.

4. Born W et al (2004). Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. J Palliative Med 2004; 7(2): 247-256.

5. Zientek, DM (2006). “The impact of Roman Catholic moral theology on end-of-life care under the Texas Advance Directives Act.” Christian Bioethics 2006; 12(1): 65-82.

6. Searight HR, Gafford J (2005). Cultural diversity at the end of life: Issues and guidelines for family physicians. Am Fam Physician 2005;71: 515-522.

7. Trotter RT, Chavira JA (1997). Curanderismo: Mexican American Folk Healing, 2nd edition, University of Georgia Press, Athens, GA, 1997.

8. Perkins HS et al (2002). Cross-cultural similarities and differences in attitudes about advance care planning. J Gen Int Med 2002; 17(1): 48-57.

9. Blackhall LJ et al (1999). Ethnicity and attitudes towards life-sustaining technology. Soc Sci Med 1999; 48(12):  1779-1789.

10. Morrison RS et al (1998). Barriers to completion of health care proxies. Arch of Int Med 1998;158(22): 2493-2497.

11. Kagawa-Singer M, Blackhall LJ (2001). Negotiating cross-cultural issues at the end of life: “You got to go where he lives.” JAMA 2001; 286:2993-3001.

12. Hern HE Jr, Koenig BA, Moore LJ, Marshall PA (1998). The difference that culture can make in end-of-life decisionmaking. Camb Q Healthc Ethics 1998;7:27-40.

13. Ersek M, Kagawa-Singer M, Barnes D, Blackhall L, Koenig BA (1998). Multicultural considerations in use of advance directives. Oncol Nurs Forum 1998;25:1683-90.