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. Author manuscript; available in PMC: 2017 Oct 12.
Published in final edited form as: Prim psychiatry. 2008 Oct 1;15(10):38–44.

The Utility of a Connecting Framework to Facilitate Understanding of and Reduce the Disparities in Hospice Care Experienced by Racial and Ethnic Minorities

Janice A Chilton 1, Evaon C Wong-Kim 2, Jeffrey J Guidry 3, Beverly J Gor 4, Lovell A Jones 5
PMCID: PMC5637534  NIHMSID: NIHMS852214  PMID: 29033533

Abstract

Rapidly changing demographics in the United States and diverse cultural beliefs impact hospice utilization and end-of-life care. Healthcare professionals and clinicians need a connecting framework to understand patients’ and their family’s perspectives regarding utilization of those services. This framework will assist healthcare workers in providing culturally sensitive and appropriate information to patients nearing the end of life, so that they and their loved ones can make informed decisions for optimal care during this passage of life. Considering the variables in this framework may also help facilitate communication between healthcare professionals and patients and reduce misunderstanding among the surviving family members.

INTRODUCTION

Hospice care, designed to help individuals and their families transition through the end of life, is underutilized by Asian and African Americans as well as Latinos when compared to non-Hispanic whites.1–3 The National Hospice and Palliative Care Organization (NHPCO) estimates that 1.3 million patients received Hospice services in 2006, representing a 162% increase in just one decade.4 While there has been an increase in racial and ethnic utilization of hospice services, the increase has been much smaller. In 2006, the percentage of hospice patients who were Caucasian was 81%.4 By comparison, between 2005 and 2006, Hospice care rose from 8.3 to 8.5 for African Americans and 1.7 to 1.8 for Asian, Hawaiian, and Pacific Islanders, while Native Americans made up approximately 0.3% of that population. No parallel data are available on the Latino population.4

The authors of this article acknowledge that “hospice” and “end-of-life” care are broad topics with widely encompassing issues. The American Academy of Hospice and Palliative Medicine includes the following parameters as inclusive of end-of-life care: expert relief of pain; treatment of a broad spectrum of symptoms, such as fatigue, breathlessness, nausea and anxiety; attention to emotional and spiritual needs; help in setting goals for care; guidance in making complex treatment decisions; and coordination of services with other healthcare providers, including primary physicians and specialists such as oncologists, surgeons and cardiologists.5

The objective of this article is not to address each dimension of end-of-life care nor to define each aspect of hospice care and provide information on which issue is likely to be a barrier to the quality of care at end of life for a particular racial or ethnic minority. Service providers group services differently based on assessed community needs or according to identified gaps in services. Rather, the goal of this article is to focus attention on the immediate need for greater inclusion of the underserved ethnic, minority, and immigrant populations, so that these individuals may benefit from the myriad of services encompassed under the umbrella of hospice service and end-of-life care.

A CONTINUING (NOT AN EMERGING) HEALTH DISPARITY

In a sentinel study on the role of values and cultures on life-support decisions among diverse populations, Klessig6 found differences among the various cultures regarding the decision to continue or discontinue life support. Among the findings of this study was that there was little difference between the responses of Muslims and Christians with regard to discontinuing life support. Both groups tended to oppose stopping life support in any situation. Klessig concluded that culture, not religion, may be the mitigating factor in making life-support decisions.

A 2-year study by Frank and colleagues7 of the attitudes about end-of-life care among a diverse group (African American, European American, Korean American and Mexican American) of elderly individuals found that Korean Americans, while having negative attitudes about the use of life-sustaining measures for themselves, had positive attitudes about the issue in general.

Almost two decades later, the research on the acceptance of hospice and end-of-life care among diverse populations remains sparse and contradictory. A study8 of a California-based hospice program found that diverse populations use hospice services and soundly reject the idea that racial and ethnic groups “cannot or will not” access or use hospice services.

AGING, DIVERSITY, AND A CHANGING DEMOGRAPHIC

Several factors have the potential either to positively or negatively impact the utilization of hospice services among racial and ethnic minorities during the next decade. The United States population ≥65 years of age is expected to double in size within the next 25 years.9 By 2030, almost one out of five Americans, ie, 72 million people, will be ≥65 years of age.9 The age group ≥85 years of age is now the fastest growing segment of the US population.9 The health of older Americans is improving and, as a nation, Americans are living longer. Still, many older Americans are disabled and suffer from chronic conditions. There will continue to be a high prevalence of chronic conditions such as heart disease, renal failure, and cancer.

As the US as a whole grows older as well as more diverse, so will the population ≥65 years of age. In 2003, older Americans were 83% non-Hispanic white, 8% black, 6% Hispanic, and 3% Asian. By 2030, an estimated 72% of older Americans will be non-Hispanic white, 11% will be Hispanic, 10% will be African American and 5% will be Asian. Regions of the country that once had few ethnic variations will see the dispersal of immigrants from a variety of groups.8 The changing demographic patterns of the American elderly population may contribute to the widening disparity in the use of hospice and other death-and-dying services. Rural areas of the nation in particular may be unable to provide hospice services for a burgeoning and ethnically unfamiliar older population.

CHALLENGES AND JUSTIFICATIONS FOR THE DEVELOPMENT OF A CONNECTING FRAMEWORK

Health professionals trained in Western biomedicine often assume that hospice provides the best medical care for individuals at the end of life. Because of the increasing racial and ethnic diversity of the US, Americans can no longer make this assumption. Each culture has unique perspectives on death and dying. In many cultures, the family, rather than the individual, makes decisions regarding health care and especially end-of-life care. Some cultures withhold information from their dying loved one because they fear that learning of their terminal status and discharge to hospice care will hasten the individual’s demise because they will lose hope. Others believe strongly that death, like birth, is just a natural part of life’s journey, and heroic measures or artificial life support should not interfere with the dying process. These beliefs may contribute to the underutilization of hospice care by some ethnic minority groups.

In developing a connecting framework, researchers and healthcare professionals may be able to identify barriers to hospice care, such as poor communication and lack of knowledge of hospice care. The connecting framework may also lead to additional areas of research regarding reasons for underutilization of end-of-life services, perceived costs and benefits of hospice care, and caregiver issues among racial and ethnic minorities. Although the authors of this article acknowledge the vast diversity within each of the major racial/ethnic groups, the following article uses the NHPCO racial and ethnic categories for which utilization data exist. Detailed examinations of specific cultural and language groups are not within the scope of this article but are fertile areas for future research.

CASE REPORT: A CHINESE AMERICAN AND HOSPICE CARE

Mrs. L was an 80-year-old Chinese woman who was born and raised in China. She attended a Catholic school while growing up in Shanghai. Mrs. L. married when she was 21 years of age and had four children. Mrs. L. was a full time homemaker before moving to the US. Although she was literate in Chinese she was limited in English proficiency. Mrs. L was living in the US for approximately 20 years before she was diagnosed with end-stage lung cancer at 78 years of age. After two doses of chemotherapy, Mrs. L was admitted to the intensive care unit with significant hypertension and headaches. Repeated computerized axial tomography scan showed that lung cancer had spread to her brain. At that point, Mrs. L’s physical condition was improving and she was discharged home with recommendation of hospice care. Because death and decision making was not the topic the family had discussed before she became seriously ill, it was not clear if Mrs. L was ready for hospice care or ready to accept that her condition was terminal. The belief that talking about death would bring bad luck and that talking about death of their parents in particular indicated a major violation of filial piety prevented a frank discussion of this important issue among family members. The “L” family also felt that by admitting the seriousness of her illness and accepting hospice, they were “giving up” on the patient. Because she would not accept the option of not pursuing further treatment, Mrs. L was not qualified for hospice care. The next 3 months before her death she was in and out of the emergency room as well as subjected to various tests and their associated pain and discomfort.

Working with dying Asian patients and their families is not an easy task. It is especially difficult for service providers to witness the pain the patients are enduring and the difficulties the families are confronting to provide the much needed care during this important phase of life. While the development of hospice care and the acceptance of such highly skilled services have made a great difference for the terminally ill, making this passage a less painful and excruciating process, many individuals in American society—especially members of minority populations—are still not utilizing this service.10–12 Research documented the disparity in utilization of hospice care among the minority populations. Asian and Pacific Islander (API) cancer patients have lower rate of hospice enrollment as compared to the non-Hispanic whites. Even when they are examined separately, all API subgroups reportedly underutilized hospice services.13 Within this population, those who are emigrated from other countries are even more likely than the US-born individuals to underutilize hospice care.2

API researchers familiar with the Asian cultural norm and beliefs provided important reasons why they are not using this service or why they enroll in this service too late.14 As demonstrated in the above case vignette, cultural belief such as that “talking about death may cause death” prevented the family from having an open discussion about end-of-life care. With the emphasis on informed consent and the patient’s acceptance of their prognosis as some of the guidelines for hospice-care referral, major barriers remain to prevent API patients from enrolling in hospice care. As suggested by API cancer researchers, hospice referral and hospice care need to be conducted in an appropriate cultural context.

Healthcare providers need to understand what hospice represents in other cultures. By refusing hospice services, the patients and families may be indicating that they are not giving up on the patient but rather are afraid of inviting death. In addition, particularly for the API culture, family involvement is an important aspect in decision making. “Filial piety” is the responsibility of taking care of the aging parents. This expectation translates to the adult children’s inherent caregiver responsibility.15 By accepting hospice care, especially institutionalized care, children are often considered to be failing their parents.

It is necessary to enhance effective communication between those in an increasingly diverse Asian-American population and healthcare professionals as they work together to navigate our complex medical system. Unless changes are made, API patients will continue to confront barriers to accessing much needed services at a time when these services could greatly impact their quality of life. What then, is the best approach to work with the minority populations underutilizing hospice care? Collectively, researchers are seeking to find a framework that can breach this gap and address this disparity.

CASE REPORT: ONE AFRICAN-AMERICAN FAMILY’S RESPONSE TO HOSPICE CARE

Mrs. J was a 65-year-old African-American female with a 10-year history of breast cancer. Hospice services were offered to her family during the last 6 months of her life. Her husband and son were her only family members. The son was the primary caregiver for the patient and he had never heard of hospice service. The father and patient had no idea of the types of services offered by hospices. The son researched “hospice” and was shocked and concerned about what he perceived was “a place to die.” The family chose to have hospice services at home; this involved “home health” services and was seen as more of a positive idea compared to hospice in an institution. The family thought that “home health” was the service being offered. The family never grasped that it was hospice care, not home health care that Mrs. J received.

A paucity of research focuses on the utilization of hospice services by African Americans. Studies document African Americans’ preference for hospice care, ie, in-hospital versus at home, and there is other research to indicate that African Americans dislike end-of-life care and have negative perceptions about hospice and end-of-life care. A comprehensive study by Haas and colleagues1 found that hospice services were utilized more in geographic areas where there were fewer African-American and Hispanic residents.

Within the African-American culture, of primary importance is the cultural phenomenon regarding the acceptance of death. African Americans, historically, have held the belief that “death” is a part of life and that death is a “personal experience”.16 According to Winston and colleagues,17 African Americans only use 8% of palliative and hospice services nationwide because of religious, spiritual, and cultural beliefs that may make their perception of hospice care incompatible within the African-American culture and belief system. Greiner and colleagues,18 in secondary data analyses of the 1993 National Mortality Followback Survey, found that African Americans, when income and access to health care were controlled for, remained less likely to use hospice services when compared to whites.

Distrust of the medical system continues to be a major healthcare mediating factor for African Americans. The impact of slavery and research misconduct, ie, Tuskegee,19 continues to have a negative impact on this populations’ ability to have confidence in the healthcare system. Reese and colleagues20 found that African Americans reported poor utilization of hospice services due to a lack of trust in the healthcare system and the lack of diversity within the hospital staff.

Johnson and colleagues21 found that African Americans were more likely to withdraw from hospice services than their white counterparts. Withdrawing was partially attributed to lack of knowledge about hospice and end-of-life care among African Americans. Kapo and colleagues,22 in a review of hospice discharges, found that African Americans were less likely to return to hospice care when compared to whites. Other studies have indicated that African Americans do not understand the hospice process.23,24

CASE REPORT: A MEXICAN-AMERICAN FAMILY’S HOSPICE CARE EXPERIENCE

Mrs. R was a 55-year-old, second-generation, American whose parents were born and raised in Mexico. She and her four siblings were born and raised in the US. Mrs. R and her siblings share the responsibility for their parents—86-year-old Mr. G, who had heart disease for the past 10 years, and 84-year-old Mrs. G, who had chronic obstructive pulmonary disease. Mrs. G worked in the textile mills for over 25 years and her illness is work related. Family support is the primary method for caring for the elderly parents. One sister lives with and cares for Mr. and Mrs. G. The other siblings, three daughters and one son, offered monthly financial support to the sister who did not work but cared for their parents. Within an 8-month period, the family’s support system was severely challenged.

Beginning in August, Mr. G was in and out of the hospital for the next 4 months. One sibling, who had not been providing primary care for the parents, became the liaison between the family and the medical team because of her self-described familiarity with the healthcare system. During Mr. G’s final hospital stay, he was combative, non-compliant, and frequently expressed his wish to die at home. In November, the family was abruptly told that Mr. G would be released from the hospital. Within 24 hours, Mr. G, who had fever and severe pain, was sent back to the hospital and entered the emergency room. He died the following morning.

The next month, Mrs. G was admitted to the hospital, where she remained for 2 weeks. Three months later, she too was re-admitted to the same hospital as Mr. G under the same physician and only one floor down from where her husband had received care. Mrs. G was pleasant, lucid, and tried very hard to complete medical tests, even those she found painful and difficult to complete. She did not want her children to think that she was giving up.

The sister, who continued to be the liaison for the family and the medical team, was informed that Mrs. G was nearing the end of life and certain steps needed to be taken. The word “hospice” was never mentioned. The family was told that Mrs. G would be discharged and a nurse would be sent to her home to provide her with care and medication to ease her pain and discomfort. Mrs. G’s other children, particularly her son, did not agree on medicating the mother when she returned home. Medication was withdrawn. By the next day, when the family noticed their mother’s discomfort, two of the siblings insisted that the medication be restarted. Three days later Mrs. G died peacefully at home.

To date, the male sibling no longer communicates with his sisters as a result of the decision that the sisters made to continue the administration of comfort medication. Mrs. R said she wished the family “had known more.” If they had, it could have been much easier for her father and for other family members.

The reasons for Latinos’ underutilization of hospice care has not been thoroughly researched.25 The lack of access to hospice care services and propensity of inadequate services have been suggested as primary mediating factors for underutilization, particularly among elderly Latinos.1 While regional differences in the availability of and level of services exist, the lack of success for extending hospice treatment to Latino patients may lie in those factors that are not easily modifiable. Cultural and religious difference, values, preferences, and attitudes all take on added weight when discussing hospice and end-of-life care.26–28

Communication between the patient and the family, the family and the healthcare professionals, and the family dynamic can become strained and difficult at the end-of-life for members of any culture. Among individuals whose primary language is not English, the transferral of accurate information for informed decision making about the purpose and benefits of hospice may not be possible.

For example, underlying the communication process among non-English speaking Latino’s is that the Spanish word, “hospicio,” has a different meaning in different Latin-American countries. In Mexico, the word is used to describe a place where poor, homeless, and orphaned children are cared for. In Chile and Ecuador the word is defined as an “asylum for the crazy, old, and needy.”29 When working with populations that may have inaccurate or no information about hospice services,23 poor communication of important concepts can be a significant barrier to acceptance and utilization. Indeed, it may be that the exact nature of hospice care may not be well understood by individuals who have had little or no pertinent experience with or need to access such services.

Perceptions of death and dying also tend to be different based upon the socio-historical perspective of those from different Latin-American countries. Across Latin America, there is a long cultural belief in the privacy and dignity of the individual.27

Chung and colleagues30 suggest that when hospice enrollment occurs close to death, hospice providers may have inadequate time to establish important trusting relationships with the dying patient and family members, address pain and suffering, and provide complex and intensive service. Based on evaluations of the attitudes and perceptions of racial and ethnic minority and the medical system, minorities tend to have lower expectations about the healthcare system and are least likely to expect a positive outcome or experience.

CULTURAL PREFERENCES AGAINST DYING AT HOME CAN ALSO IMPACT THE TYPE OF HOSPICE SERVICES THAT LATINOS ACCEPT

Studies of ethnically diverse samples of hospice patients may provide insight into cultural preferences for place of death.21 In addition, cultural preference about the use of pain medications at the end of life must be carefully understood. Anecdotally, among Latinos (and African Americans), medication may be seen as a way to end life prematurely; some families have indicated misgivings about having their loved ones end life as an “addict.”

Higher levels of acculturation may impact family support systems. In one study31 among Mexican Americans, the availability of a caregiver indicated that they were less likely to rely on their children as caregivers. Worsening economic conditions may prove to have an ever greater impact on the number of individuals who may choose to reenter the workforce.

BEING MINDFUL THAT MANY CULTURES ARE NOW PART OF THE AMERICAN LANDSCAPE

Not since the turn of the century has American society experienced such an influx of new and diverse citizens. While there may be few issues that transcend the different racial and ethnic groups, one cultural fact remains. Ideas and beliefs regarding death and dying are always strongly rooted in cultural norms.

How should health professionals extend the continuum of care to diverse populations? There are no easy answers. Arab Muslims are reluctant to prolong life and have a strong belief and value system that gives the primary responsibility of caring for the sick and elderly to their children.26 The communication of information about the possibility of impending death is seen as impolite among the Vietnamese.32 Asian-Indian cultures see death as a temporary phase followed by reincarnation.33 Among Asian-Indian Hindus, it is necessary to understand that a “belief in karma-driven spiritual salvation” has resulted in the idea that “spiritual salvation is not limited on one life span.34

Native Americans view the discussion of death and dying as a personal decision. As a culture, however, the subject is one that is not easily and openly discussed. Like all Americans, Native Americans are living longer and, therefore, end-of-life issues and hospice care are increasingly relevant to this population.35 Hospice of Oklahoma County is one of the first of its kind to seek to meet the needs of Native Americans by incorporating cultural beliefs about death and the afterlife into care.35

Healthcare professionals may have little time or information sources to bolster their understanding of end-of-life issues when death is eminent. The acceptance of cultural norms, even when understanding may be limited, will be an important first step for healthcare professionals as they offer and explain end-of-life care to patients and their families.

A CONNECTING FRAMEWORK

The objective of a Connecting Framework is to promote awareness and understanding of the barriers to hospice care acceptance and utilization and to promote the need for more research among an increasing diverse US population. The Table represents an initial attempt to develop a framework of components that are interconnected and synergistic. In short, it is not possible to disconnect the individual from his culture. Furthermore, the increasing complexity and sophistication of the current healthcare system is a major barrier that must be considered when attempting to engage racial and ethnic minorities who have been marginalized in yet another aspect of the continuum of care.

TABLE.

A CONNECTING FRAMEWORK*

Individual Level Cultural Level Systemic Level
Race/ethnicity NA Racism
Religiosity Religions/spiritual orientation Lack of knowledge/acceptance of different cultures
Personal preferences/autonomy Cultural norms Lack of knowledge/acceptance of different cultures
Views on death, dying, and disease Views on death, dying, and disease Lack of knowledge/acceptance of different cultures
Family dynamic patterns Family roles Western concept of patient autonomy
Access to primary care physician Views on Western medicine Inadequate health resources
Lack of knowledge and misinformation about hospice care Lack of trust/familiarity with the healthcare system and concepts related to end-of-life transition Lack of knowledge and misinformation about hospice care of health professionals
Communication barriers Language Lack of health interpreters
Decision-making patterns Decision-making patterns Decision-making patterns
Mistrust in health care system Lack of information and mistrust of health care system Disconnect in health care system- “Hand off” of patients
Poverty Cultural values Inadequate financial services/health insurance
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*

A connecting framework toward understanding individual, cultural, and systemic level variables that may impact hospice care utilization by ethnic/racial minorities.

NA=not applicable

An instrument is needed to assess the individual’s placement in the spectrum of individual, cultural, and systemic level barriers. The previous vignettes identify some common elements that continue to emerge among racial and ethnic cultures in response to the utilization of and access to hospice care. Some of these characteristics may be modifiable, ie, lack of knowledge. Some may need to be acknowledged and incorporated into the healthcare plan. Individual level components indicate those characteristics that must be acknowledged on a personal or group level. Cultural-level components combine constructs from the identity system of the patient (eg, views on death and dying) and constructs from the provider identification system (eg, views responsive to Western Medicine). Systemic-level components are those characteristics that can only be addressed at the policy or provider level.

The framework must be modifiable, ultimately represent best practices, and be evidence based. Just as in the case of evidence-based medicine, the development of an evidence-based tool can only spring from research into this multi-faceted healthcare issue.

The outcome of a basic assessment tool could be to remind healthcare professional to be aware of the complex needs, cultural norms, and barriers to hospice care acceptance and utilization. An important next step would then be the continuation of research and development of interventions to address individual, cultural, and systemic-level shortfalls.

Despite current needs, it is possible and necessary to provide information to healthcare professionals as they assess system-level barriers to expand end-of-life care to racial and ethnic minorities, while providing the information necessary to allow individuals and their families to make informed decisions about end-of-life care.

CONCLUSION

Guidelines for cultural and linguistically appropriate services do exist and can be used to address the disparity.8 Individual attitudes and knowledge about hospice care, end of life care, and cultural responses related to death and dying must be better understood.2,24

Research is also needed to understand the decision-making process regarding life-support decisions, end-of-life care, and the role of family in the decision-making process among diverse cultures. It has long been accepted that strong family relationships and support systems can lead to positive health outcomes across disease conditions, including cancer.35 The family dynamic can hinder or support efforts to access end-of-life care. Healthcare professionals must also begin to understand and then address system-level determinants such as rates of referral, availability of resources, and the cultural awareness of healthcare professionals to improve rates of acceptance and utilization.

Footnotes

Disclosures: The authors report no affiliation with or financial interest in any organization that might pose a conflict of interest.

Contributor Information

Dr. Janice A. Chilton, Instructor in the Department of Health Disparities at The University of Texas M.D. Anderson Cancer Center in Houston.

Dr. Evaon C. Wong-Kim, Associate professor in the Department of Social Work at California State University in East Bay.

Dr. Jeffrey J. Guidry, Associate professor in the Department of Health and Kinesiology at Texas A&M University in College Station.

Dr. Beverly J. Gor, Postdoctoral fellow in the Department of Health Disparities at The University of Texas M.D. Anderson Cancer Center in Houston.

Dr. Lovell A. Jones, Professor in the Department of Health Disparities at The University of Texas M.D. Anderson Cancer Center in Houston.

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