Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations March 2007 Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations Prepared for California HealthCare Foundation by lead author LaVera Crawley, M.D., M.P.H. Stanford University Center for Biomedical Ethics co-author Marjorie Kagawa Singer, Ph.D., R.N., M.N. UCLA School of Public Health and Asian American Studies Center research assistants Lori Ellen Rutman, M.P.H. Stanford University Center for Biomedical Ethics Sarah Chaudhary, M.P.H. Stanford University Center for Biomedical Ethics March 2007 About the Authors Dr. Crawley is a medical ethics researcher and assistant professor in Pediatrics at the Stanford University School of Medicine Center for Biomedical Ethics. She has conducted ethnographic and focus group research on EOL care for African Americans and has been the lead author of several articles on the subject of culturally appropriate palliative care cited both nationally and internationally. Dr. Kagawa Singer is an anthropologist and professor at the UCLA School of Public Health and Asian American Studies Center. She has published, lectured nationally and internationally, and taught on issues in cross-cultural health care, cancer, pain, grief and bereavement, EOL decision-making, and quality of life. Lori Ellen Rutman, M.P.H., is a medical student at Stanford University, where she is a part of the Biomedical Ethics scholarly concentration. Sarah Chaudhary, M.P.H., is a research assistant at Stanford University’s Center for Biomedical Ethics. About the Foundation The California HealthCare Foundation, based in Oakland, is an independent philanthropy committed to improving California’s health care delivery and financing systems. Formed in 1996, our goal is to ensure that all Californians have access to affordable, quality health care. For more information about CHCF, visit us online at www.chcf.org. ISBN 1-933795-20-4 ©2007 California HealthCare Foundation Contents 5 I. Executive Summary Population-Based Approach to EOL Care Hospice — Barriers to Care EOL Care in Emergency Settings Find Your Friend: Culturally Appropriate Advance Care Planning Provider Training for Pain Management Communication and Trust A Promising Healthcare Workforce Training Model Recognizing the Individual Improving EOL Care for Subgroups Benefits Everyone Recommendations 11 II. Background Who Dies in California? What Do Californians Die from? How Do Californians Die? Death Trajectories 18 III. Systems of Care Available or Needed at the End of Life Health Service Delivery Implications of Trajectories of Dying Where Do Californians Die? 24 IV. Factors Affecting EOL Care for Immigrants Use of Health Services Access to Insurance and Other Public Benefit Views Toward Palliative Care — an Example 26 V. Decision-Making Racially, Ethnically, and Culturally Appropriate Care Planning Advance Planning and Cultural Diversity 30 VI. Pain and Symptom Management Issues Ethno-Cultural Issues Physician Education Pharmacies 36 VII. Culturally Appropriate Communication Communication and Language Trust and Trustworthiness in EOL Care Contents, cont. 40 VIII. Effect of Immigration on EOL Caregiving Increasingly Immigrant Workforce Factors Fueling Immigrant Workforce Language Issues Discrimination Immigration Status Issues 44 IX. Conclusion 46 Endnotes I. Executive Summary Efforts to improve EOL care for diverse Approximately 235,000 Californians died in 2004 population groups will likely result in — a number that will increase annually as the state’s population continues to grow and the demographic shift brings an a care system that will benefit all of unprecedented number of elderly to its census. The most California’s residents. populous state in the country, California is also the most diverse ethnically, and thus is in a position to provide leadership for the rest of the nation on how best to provide quality care to a diverse multicultural population. With this in mind, the California HealthCare Foundation has focused resources on examining end-of-life (EOL) care delivery for Californians. To understand the effect of racial, ethnic, and cultural factors on the delivery of EOL care, the authors explored a range of issues critical for evaluating how Californians experience dying. They also investigated several areas in depth to report on both the progress made and the persistent gaps in delivering quality care at the end of life for California’s multi-ethnic, multicultural, and racially diverse population. Much of this report is pertinent to immigrant patients, families, and communities as it relates to culturally mediated EOL issues for persons whose beliefs, values, preferences, behaviors, and language needs differ from Euro-Americans (non-Latino Whites). However, this report also addresses issues specific to non-U.S. citizenship. For the immigrant and his or her family, accessing quality care and finding funds for hospice, palliative care, and other EOL health services is a complex and potentially confusing process that is compounded by changing laws and regulations and a polarized national climate. This report also highlights how the patterns of dying and EOL care needs differ between immigrants and the general U.S. population and how immigration affects the workforce that provides caregiving for those who are dying. Population-Based Approach to EOL Care Foremost, this report follows from a critical population-based perspective that has explored and identified causes and patterns of death. Dying is a process, and death is its outcome. By first studying those who have died, from which conditions, in what Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 5 kinds of patterns, and where those deaths took place, services. This latter problem has been laudably researchers may be better able to assess the care needs addressed in California. Large hospices and those of those engaged in the process of dying. In addition, located in multi-ethnic communities have been more this approach enables them to identify future needs successful in offering culturally appropriate services for different populations and indicate which groups than small independent hospices or those in mostly might be at future risk for poor quality care. White communities. However, many immigrants face an additional barrier to hospice because they’re A population approach to exploring the state not eligible for most federal and state health care of quality care at the end of life provides a clear benefits. comparative picture among the state’s ethnic populations of who died, and how. Differential EOL Care in Emergency Settings rates of death exist among the populations residing In California, younger persons who are Latino, in California. Data from the Center for Health Native American, or African American die Statistics show that African and Native Americans disproportionately from unexpected, sudden deaths have the highest death rates, while Asian Americans due to accidents and assaults. While this strongly have the lowest rate of all population groups. suggests that the state increase interventions in public health prevention and acute and emergency Hospice — Barriers to Care clinical care, one cannot realistically expect that Identifying causes and patterns of death provides a all deaths from these events will be completely starting place to consider what systems of care are eradicated. People will still die from car accidents, needed for different causes and patterns of dying. gunshot wounds, falls, and other traumatic incidents. Like the general U.S. population, most causes of They will need EOL care, and their families and death among all California’s populations are due to loved ones will need bereavement care services. serious chronic illnesses and terminal conditions for Improving EOL care in emergency settings would which traditional models of EOL care are designed benefit all Californians. and implemented. For these deaths, the hospice model has been considered the gold standard for Find Your Friend: Culturally care of the dying. Appropriate Advance Care Planning All persons, regardless of race or ethnicity, may face This assumption is now being questioned. Payment challenges in decision-making and ethical quandaries and reimbursement systems for hospice and palliative related to EOL care delivery, but the chances for care have created barriers for some racial/ethnic conflicts increase when patients and providers do not populations, including the Medicare Hospice Benefit share the inherent values represented by bioethics requirements that force patients and families to practices in this country. Advance care planning, make dichotomous choices — decisions that may another gold standard in EOL care, may not be appear to be between life and death. Needing to valued or understood by certain ethnic communities, choose between accepting hospice and comfort particularly those who may consider discussion of care to the exclusion of life-extending or potentially death to be taboo. This does not mean that we, as curing interventions presumes that patients are a society, should abandon the goals of determining willing to accept a limited prognosis and to embrace patient values and preferences for care at the end dying — an assumption that may conflict with some of life, but rather adopt approaches that are more cultural beliefs and values. culturally appropriate. Other barriers to hospice use may include the This report highlights one community-based project, absence of culturally and linguistically appropriate undertaken by Oakland’s Ethnic Health Institute, 6 | California HealthCare Foundation that developed and implemented a culturally Communication and Trust acceptable alternative to advance directives for Ethnically diverse patient populations require a African Americans. This project reframed discussions health care workforce that can provide culturally about preference for dying to encourage the and linguistically appropriate services such as those designation of a family member or friend who would recommended by the U.S. Department of Health know an individual’s values should the need for and Human Services Office of Minority Health. surrogate decision-making arise. Workforce issues, including limited numbers of trained and available translators across health care Provider Training for Pain Management settings, compromise quality care for the state’s A competent and skilled workforce is paramount monolingual non-English-speaking patients and for providing quality EOL care for all Californians. families. Poor or miscommunication may engender AB 487, the Pain Management and Appropriate mistrust, a problem reported by many providers who Care and Treatment of the Terminally Ill bill that work in cross-cultural settings. requires physicians to complete continuing education in this area, was an effort to improve the knowledge The authors have observed that trust or mistrust base of physicians in the state. Most unfortunately, is not the solitary experience of the patient, but the law did not require, and many educational rather the outcome of a process involving at least providers offering courses did not include, any two parties — the one who trusts and the one who is curriculum on racial/ethnic disparities in pain or trusted. Both parties bear some responsibility for the on topics related to pain and suffering as culturally outcome of interactions. Cultivating trust requires mediated processes. In addition, there has been little all members of the health care delivery system to to no oversight regarding the quality of courses and examine their own trustworthy or untrustworthy content that meet the requirements of AB 487. actions and intentions. If the state continues to mandate provider education Although California boasts being the most diverse in pain and palliative care beyond the 2006 deadline, state in the country, racial and ethnic populations new legislation that went into effect in January 2006 are still at risk of experiencing bias in health care. (the Cultural and Linguistic Competency for As described in the Institute of Medicine report Doctors bill, AB 1195, requires that all future on unequal treatment, bias, stereotyping, and Continuing Medical Education programs contain a prejudice are processes that have causal mechanisms cultural competency component) may address the that may exist at patient, provider, or systems concern of inadequate education in ethno-cultural levels. The authors observed interactions in which aspects of pain management and EOL care. But this miscommunication and mistreatment of patients by should be monitored to insure that the health care providers was not likely the result of overt, conscious, community prepares a medical workforce competent or intentional acts of racism by the providers, but to provide equitable, competent, and culturally and rather the unconscious acts resulting from provider linguistically appropriate EOL care. burnout. There were tremendous burdens placed on one observed public health facility, including Other regulatory bodies should follow the lead of the serious reductions in available services, that in turn California Medical Board. Pharmacists, who are also overwhelmed the workload of otherwise dedicated required to complete ongoing continuing education, health care workers. may be an important link in the causal chain for inadequate pain management among ethnic/racial groups and would benefit from mandates similar to AB 1195. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 7 A Promising Health Care Workforce communication and trustworthiness — will likely Training Model result in a care system that will benefit all of Preparing a workforce to provide equitable, California’s residents. competent, and culturally and linguistically appropriate EOL care will require training models Recommendations that address a range of critical issues. This report highlights an innovative model for training, the Policy/Regulation ACCESS program administered through VISIONS  Encourage public health officials to include Inc., which may be a rich resource for training across improving quality of dying in their prevention key elements of EOL care through an effective priorities. framework grounded in multiculturalism.  Support strategies that encourage and increase the number of care delivery institutions that provide Recognizing the Individual culturally and linguistically appropriate services Although this project for the California HealthCare by incorporating guidelines developed by the Foundation had the goal of focusing on race, U.S. Department of Health and Human Services ethnicity, and culture in EOL care, one must Office of Minority Health. acknowledge a potential paradox: while respecting differences among California’s various populations,  Support education and training programs for there is always a risk of essentializing groups and emergency personnel on unique issues of death stereotyping individuals. By essentializing, that is to and dying in EMS and emergency department presume that all members of a group are the same, settings. one may fail to acknowledge that individuals inhabit  Mandate continuing education modules that multiple socio-demographic identities simultaneously specifically address cultural diversity in decision- and that movement among these identities is making as part of AB487 extension. fluid depending on need or the particularities of circumstances. It follows, then, that there are  Consider extending the requirement for periodic situations or circumstances where membership in continuing education in pain management and a racial, ethnic, or cultural group would not be the palliative care for all state-licensed physicians only factor influencing EOL care. beyond the December 31, 2006 deadline.  Require and provide oversight to insure that all Improving EOL Care for Subgroups future continuing medical education courses Benefits Everyone and curricula include modules on ethno-cultural While the goal of this report was to focus on aspects of pain and palliative care. recommendations to improve EOL care for the state’s ethnically, racially, and culturally diverse  Create legislation similar to AB 1995, the populations, any efforts to improve care for the Cultural and Linguistic Competency Bill for dying patient or family will most likely positively physicians, that creates cultural competency affect the care of all persons, regardless of ethnicity education mandates for pharmacists and other or race. Conversely, efforts targeting care for diverse state-licensed providers engaged in EOL care. population groups — attending to and eliminating  Establish training and continuing education causes of disparities, creating and supporting requirements similar to AB487 for all other health culturally appropriate health delivery systems, professionals involved in EOL and palliative care improving processes of decision-making across (such as nurses, social workers, pharmacists, and cultures, addressing ethno-cultural aspects of pain respiratory therapists). and symptom control, and generally improving 8 | California HealthCare Foundation  Develop mechanisms for quality monitoring  Provide continuity, coordination, and and development of culturally and linguistically comprehensiveness of essential services in every appropriate service improvement strategies for community. providers and institutions.  Enhance strategies to improve EOL decision-  Providers, institutions, and organizations in the making, such as advance planning and other field of palliative and EOL care should consider communication strategies. the public health implications of death and  Increase and improve bereavement services and dying among immigrants in the United States to resources in emergency settings. understand the morbidity and mortality patterns and disparity implications for these populations  Create opportunities for dialogue among coroner’s and to advocate for public policy beneficial to offices, law enforcement officials, emergency immigrant patients and their families. departments, and bereavement care or other EOL care providers, institutions, and organizations for  Bi-national structures that are already in place improving EOL emergency room experiences for such as the California Office of Bi-national families. Border Health and the United States – Mexico Border Health Commission (the latter has  Create systems of referral through emergency adopted the Healthy Border 2010 program) departments for bereavement services. should be lobbied to include EOL care in  Minimally, safety net delivery systems should be their health promotion and disease prevention supported and expanded to include EOL and agendas.1– 3 palliative care services.  Pending comprehensive immigration reform, care needs for all persons facing the end of life should Funders be covered by public benefits..  Fund demonstration projects that model best practices of community-based EOL decision- Payers/Purchasers making strategies.  Find alternative funding strategies, including  Encourage funding for hospital ethics committee reform of Medicare Hospice Benefit restrictions, training on cultural diversity in EOL values and to allow for appropriate aggressive treatments perspectives. while receiving palliative care coverage when such treatments and interventions stand to enhance  Fund faculty development and expansion for patients’ lives. programs like ACCESS.  Support Pay for Performance strategies applied  Fund train-the-trainer programs to increase the to the care of dying patients to improve quality reach and influence of programs like ACCESS. EOL care.  Include support for programs to continually revise and update culturally appropriate EOL/palliative Providers care curricula.  Increase knowledge and use of evidence-based appropriate medical treatment.  Increase number of hospitals and nursing homes with quality palliative care services. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 9 Other Stakeholders  Expand approach from limited individualized care strategies that dominate the EOL care field to include population-based implications of death and dying.  Use death trajectory models to identify needs of dying patients and families.  Encourage use of population-based models to ensure such coordination and continuity.  Create mechanisms for partnership building between programs like ACCESS and other EOL coalitions (i.e., California Coalition for Compassionate Care).  Other initiatives should include cross-national efforts to collaborate on research, education, and health care delivery that may affect or improve palliative care in the home countries of California’s immigrants.  To combat discrimination and exploitation of immigrant health care workers and home caregivers, health care facilities should develop and implement assimilation programs to integrate new nurses into the existing culture and to educate existing employees about the far-reaching benefits of cultural diversity. 10 | California HealthCare Foundation II. Background Identifying patterns of death among Who Dies in California? California’s racial, cultural, and ethnic End-of-life (EOL) care is the medical, social, psychological, communities is the first step in identifying spiritual, and financial care and attention provided to persons care needs at the end of life. and their families who are facing death. Making good quality care available for those who will die requires knowledge of this target population.4 Identifying patterns of death among California’s racial, cultural, and ethnic communities is the first step in identifying care needs at the end of life. Who dies in California? In 2004, 235,300 Californians died.5 The most populous state in the country, California is also the most ethnically and racially diverse. Differential rates of death exist among the varied population groups who live in the state. The California estimated age-adjusted death rate for 2004 was about 724 deaths per 100,000 persons (using 2000 U.S. standard population).6 This was less than the national estimate of 801 deaths per 100,000.7 As shown in Table 1, African Americans and Native Americans in California had significantly higher age-adjusted death rates. African Americans had 1.4, 1.6, and nearly 3 times the rates of Whites, Latinos, and Asian Americans, respectively, while Native Americans had nearly 2 times the age-adjusted death rates of Whites and Latinos and 3.5 times the rate of Asian Americans. Asian Americans had the lowest death rate of all groups. Table 1. Death by Race/Ethnicity, 2004 California RACE/ % T O TA L NUMBER OF AGE-ADJUSTED ETHNICITY* P O P U L AT I O N D E AT H S R AT E P E R 1 0 0 K † White, Non-Latino 44.5% 164,674 814.5 Latino 34.7% 33,701 739.5 Asian American 12.1% 10,964 411.8 African American 6.8% 18,592 1145.8 Native American 1.2% 1,902 1434 TOTAL 99.3%‡ 229,833 723.7 *Excludes Pacific Islanders, race/ethnicity unidentified, or those categorized as other. †Number of deaths per 100,000 population, age-adjusted to 2000 U.S. Population Standard. Rates allow for standard comparisons across different racial/ethnic groups. ‡Total reflects the exclusion of subgroups listed. Sources: Center for Health Statistics, Death Statistical Master Files; U.S. Bureau of the Census Population Data. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 11 Data Limitations to the United States primarily looking for work or The information to be gleaned from this data is other opportunities. Most are part-time or temporary limited by the fact that it reflects the collapsing of workers without employment-based insurance.8 They several distinct communities into single population are generally a healthy population when they arrive groups. For example, Latinos are persons with in the United States.9 These younger immigrants ancestry from countries in Latin America, Spain, may decide to stay in the United States due to or the Caribbean who represent the full range of difficulties with re-entry once they leave or because “racial” categories. Similarly, the Asian category of lack of opportunities in their home country.10 consists of persons from a range of disparate Other reasons to stay may include ties to extended nationalities. Because national data is reported intergenerational familial networks. Thus, those based on five single broad categories of race and one who stay permanently may eventually become part dichotomous category of ethnicity (Latino or non- of the cohort of aging adults. In California, elderly Latino), it is difficult to calculate age-adjusted death immigrants (primarily Asian and Latino) make rates for subgroups within California’s multi-ethnic up 20 percent of the state’s senior population.11 populations. However, state death records do report According to Census projections, this figure is causes of death using disaggregated racial and ethnic expected to rise considerably over the next few categories. (See Appendix A in the supplemental decades.12 These projections may need adjustment to report for causes of death across Latino and Asian account for return emigration by some individuals to American subgroups.) their native countries. Immigration’s Influence Age of Death Varies by Subgroup It is also important to understand the effects of Analysis of the 2004 California Death Statistical immigration status on EOL care in California. Master Files suggests that the distribution of age at Immigrants are among the fastest growing death varies among California’s ethnic immigrant population in the United States. If current sub-populations. (See Figure 1.) For example, deaths growth trends continue, nearly two-thirds of the among persons born in China occurred in a much population in 2050 will be immigrants. The largest older age group than those born in Mexico. A large growing segment of immigrants includes those proportion of deaths (58 percent) among Mexican- who have entered this country illegally or who born Mexican residents occurred in the age group have overstayed their visas. They are referred to as of 15 to 64 years (working and middle age). This undocumented, unauthorized, or illegal and are finding suggests that while immigrants may arrive in ineligible for most federal benefits except for care California in relatively good health, some will face that is deemed emergency and life-threatening. In dire circumstances that may lead to death. California, estimates suggest that over 2,500,000 undocumented immigrants reside in the state (27 What Do Californians Die From? percent of the nation’s undocumented population), The leading causes of death for Californians in 2004 with major concentrations in both the Bay Area are shown in Table 2. and Los Angeles regions. The vast majority of these immigrants are from Mexico. As Mexicans represent When stratified by race and Latino ethnicity, each the largest immigrant group in California, findings population bears unique, additional burdens from in this report focus primarily on Mexican (Latino) diseases that are not among the top ten causes of immigrant issues. death for others. For example, uniquely among African Americans (and no other aggregated Greater than 25 percent of these undocumented population group), HIV is among the top ten causes persons are between ages 15 to 44 years and come of deaths. Among Asian Americans, infectious 12 | California HealthCare Foundation Figure 1. Age at Death by Birthplace, Residence, or Mexican Immigrant Status* Young Worker Age Middle-Aged Adults Older Adults Elderly (0–15) (15 – 44) (45 – 64) (65–74) (75+) Born in Mexico 1% 18% 26% 17% 38% Born in China 1, 3% 12% 16% 68% Born in Vietnam 0% 9% 27% 20% 44% Mexican Resident 6% 33% 21% 21% 18% Other Non-U.S. Resident 4% 18% 26% 27% 25% Mexican Immigrant 7% 39% 19% 17% 18% *For an explanation of non-U.S. status categories, see section: Epidemiology of Death Among Immigrants in California. Data on Mexican immigrant status is based on proxy calculations determined by birthplace and official residence at time of death. Source: Center for Health Statistics, Death Statistical Master Files. Table 2. Leading Causes of Death and Share of Total Number, by Race in California, 2004 N AT I V E AMERICAN ALL ASIAN AFRICAN /ALASKAN PERSONS WHITE L AT I N O A M E R I C A N A M E R I C A N N AT I V E % of % of % of % of % of % of C A U S E O F D E AT H Rank Total Rank Total Rank Total Rank Total Rank Total Rank Total Heart Disease 1 31% 1 32% 1 25% 2 26% 1 31% 1 28% Cancer 2 25% 2 25% 2 21% 1 31% 2 24% 2 22% Cerebrovascular Disease 3 9% 3 9% 4 8% 3 12% 4 9% 4 4% Trauma and Other External Causes 4 8% 5 6% 3 14% 4 8% 3 10% 3 13% Chronic Respiratory Disease 5 7% 4 8% 7 4% 5 5% 5 5% 5 6% Alzheimer’s and Other Nervous 6 5% 6 6% 8 3% 7 3% 7 3% 8 3% System Diseases Diabetes 7 3% 7 2% 5 6% 6 4% 6 5% 7 5% Dementia/Organic Mental Diseases 8 2% 8 2% — — — — 9 <2% 9 <2% Chronic Liver Disease and Cirrhosis 9 2% 10 <2% 6 4% — — — — 6 5% Diseases of the GI System 10 2% — — — — 10 <2% — — 10 <2% Nephritis — <2% 9 <2% 10 2% 8 2% 8 2% — — HIV Disease — <1% — — — — — — 10 <2% — — Infectious Disease — 1% — — — — 9 <2% — — — — Perinatal — <1% — — 9 2% — — — — — — Source: Center for Health Statistics, Death Statistical Master Files. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 13 diseases and among Latinos, perinatal conditions are Health Services does not include citizenship status; among the unique top ten causes of death for each therefore, the authors could not accurately determine of these groups. the immigrant status of California decedents based on information compiled from death certificates. Patterns of Death for Subgroups When looking at sub-populations, other patterns One can, however, make proxy assumptions based emerge. (See Appendix A.) For example, although on place of birth and stated residence at the time of perinatal conditions were among the leading causes death. The authors analyzed data based on where of death for Latinos as a whole, this was not the the decedent was born; the official residence at the case for Cubans or Puerto Ricans. HIV/AIDS was time of death; and, among non-U.S. born persons not counted among the top ten causes of deaths for who were registered residents of California, location Latinos as a whole, but was included among deaths of death (even deaths that occurred outside of the for Puerto Ricans and Central/South Americans. country) from data available in the Death Statistical Among Asian Americans, a top ten cause of death Master Files maintained by the Center for Health includes diseases of the GI system. However, this was Statistics. These proxies for immigration status a leading cause of death for Chinese and no other enabled the authors to examine patterns and trends subgroup of Asian Americans. Persons of Japanese within this population, but it is unknown if these ancestry died from dementia; Laotians died from persons were full-fledged citizens, eligible for the inflammatory musculoskeletal diseases, perinatal, and range of state and federal benefits for EOL or other congenital conditions; Koreans and Southeast Asian palliative care needs. See Tables 3 to 5. groups (Cambodians, Vietnamese, Laotians, and Hmong) died from cirrhosis and other liver diseases; Table 4. Top Three Causes of Death in California, by Residence at Time of Death and Cambodians and Thais died from HIV/AIDS. ALL OTHER These varied causes of death among Asian American PERSONS MEXICO COUNTRIES subgroups do not fall within the top ten causes of CAUSE % of % of % of death when aggregated under the larger Asian racial O F D E AT H Total Rank Total Rank Total category. Heart Disease 1 31% 2 16% 1 39% Cancer 2 25% 3 15% 2 25% Death Among Immigrants in California. Death Trauma and 4 8% 1 40% 3 16% data collected by the Office of Health Information Accidents and Research of the California Department of Source: Center for Health Statistics, Death Statistical Master Files. Table 3. Top Five Causes of Death, by Birthplace ALL PERSONS CHINA CUBA MEXICO PHILIPPINES VIETNAM % of % of % of % of % of % of C A U S E O F D E AT H Rank Total Rank Total Rank Total Rank Total Rank Total Rank Total Heart Disease 1 31% 2 27% 1 36% 1 27% 1 33% 2 24% Cancer 2 25% 1 33% 2 24% 2 23% 2 28% 1 35% Cerebrovascular Disease 3 9% 3 14% 3 8% 4 9% 3 13% 3 12% Trauma and Accidents 4 8% 5 5% — — 3 14% — — 4 8% Chronic Respiratory Disease 5 7% 4 6% 4 7% — — 4 6% 5 5% Diabetes 7 3% — — 5 6% 5 6% 5 5% — — Source: Center for Health Statistics, Death Statistical Master Files. 14 | California HealthCare Foundation Table 5. Top Causes of Death in California, Figure 2. Patterns (Trajectories) of Dying and Share by Mexican Birth AND Residence* of California Deaths, 2004 MEXICO ALL BIRTH/ PERSONS RESIDENCE SUDDEN DEATH High C A U S E O F D E AT H Rank % of Total Rank % of Total Heart Disease 1 31% 2 17% FUNCTION Cancer 2 25% 3 11% 9% Trauma and Accidents 4 8% 1 45% Death *Proxy for Mexican immigrant status. Low Source: Center for Health Statistics, Death Statistical Master Files. TIME Implications for EOL Care for Immigrants. In TERMINAL ILLNESS High 2004, the top causes of death in California for persons born in China, Mexico, the Philippines, and FUNCTION Vietnam were similar to patterns for the state’s multi- ethnic populations (Asian Americans and Latinos). 27% The exception is the pattern for Cuban-born Death decedents (where trauma was not among the top five Low causes of death). (See Table 3.) Of significance in TIME causes of death by residence is the finding of trauma and accidents as the number one cause of deaths ORGAN FAILURE High among Mexican residents. FUNCTION How Do Californians Die? Death Trajectories In some cases death can be the predictable 49% Death culminating event following advanced age or certain Low illnesses. In others, it may appear suddenly or TIME unexpectedly after trauma or from a health condition FRAILTY whose trajectory is unpredictable. Dying — the range High of events preceding death — is a temporal process. FUNCTION The care required to attend to the needs of dying patients and their families is, among other things, a function of timing that reflects the natural history 15% or trajectory of the underlying cause of death.13, 14 Low Death (See Figure 2.) TIME  Sudden, unexpected deaths (9 percent of deaths Sources: Lunney et al., Patterns of Functional Decline; Chan, End-of-life models; in 2004) are marked by prior states of high Center for Health Statistics, Death Statistical Master Files. functioning followed by an abrupt event, such as a motor vehicle accident, suicide, or gunshot wound.  Individuals with a diagnosis of cancer often follow the trajectory of terminal illness (27 percent of deaths), where there is some period of high Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 15 to fairly high functioning, after which there is Racial/Ethnic Trajectories of Death15 commonly a predictable course of decline, leading Trajectory patterns for deaths in 2004 among to death. The Medicare Hospice Benefit eligibility, different racial/ethnic populations in California are which requires a terminal prognosis of 6 months similar to the patterns shown for all Californians or less, is based on this trajectory pattern. with the exception of deaths following suddenly from trauma, accidents, or other unexpected events.  The trajectory of organ failure (49 percent of (See Figure 3.) While trajectories that follow a deaths), associated with chronic, eventually fatal sudden pattern constitute 7 to 8 percent for Whites conditions, is one of compromised functioning and Asian Americans, they represent a larger percent followed by a decline punctuated by periods of of deaths for Latinos, African Americans, and Native acute, sudden deterioration with recovery to a Americans. Most significantly, unique among lower level of functioning. A significant result Latinos, Mexican immigrants, and Native Americans of this pattern is that patients, families, or even is the higher percent of sudden deaths (which providers cannot always predict which sudden disproportionately affect younger persons) over episode of decline will result in recovery or death; the percent of deaths associated with frailty (which in addition, experiences with previous recoveries generally affect older persons). may cause patients or families to insist on aggressive, resource-intensive treatments even at The authors calculated proportions of death by the point when decline toward death is imminent. trajectory type for Mexican resident vs. other non-  Lastly, patterns of frailty (15 percent of deaths), U.S. resident deaths and found striking differences such as those seen among the eldest elderly or (figures not shown). Sudden, unexpected deaths patients suffering from strokes or Alzheimer’s made up 44 percent of deaths for Mexican residents disease, begin with low functioning followed by a vs. 17 percent for other non-U.S. resident deaths. prolonged decline toward death. By contrast deaths from chronic disease made up 30 percent for Mexican residents vs. 48 percent for other non-U.S. residents. 16 | California HealthCare Foundation Figure 3. Patterns (Trajectories) of Dying and Share of Deaths, by Race/Ethnicity, 2004 SUDDEN DEATH TERMINAL ILLNESS ORGAN FAILURE FRAILTY African American High High High High FUNCTION FUNCTION FUNCTION FUNCTION 11% 26% 13% Low Death Low Death Low 50% Death Low Death TIME TIME TIME TIME Asian American High High High High FUNCTION FUNCTION FUNCTION FUNCTION 8% 33% 17% Low Death Low Death Low 42% Death Low Death TIME TIME TIME TIME Latino High High High High FUNCTION FUNCTION FUNCTION FUNCTION 16% 25% 12% Low Death Low Death Low 47% Death Low Death TIME TIME TIME TIME Native American High High High High FUNCTION FUNCTION FUNCTION FUNCTION 14% 24% 12% Low Death Low Death Low 50% Death Low Death TIME TIME TIME TIME White High High High High FUNCTION FUNCTION FUNCTION FUNCTION 7% 27% 16% Low Death Low Death Low 50% Death Low Death TIME TIME TIME TIME Sources: Lunney et al., Patterns of Functional Decline; Chan, End-of-life models; Center for Health Statistics, Death Statistical Master Files. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 17 III. Systems of Care Available or Needed at the End of Life “We had a referral of a patient from Health Service Delivery Implications of home health that we wanted to refer to Trajectories of Dying The significance of these trajectories relates to the implications for a hospice agency in town. She was an care needs for distinct patterns of dying. The health system needs African American female, a young girl of a patient dying from a prognostically predictable condition, such who was dying of end-stage cervical as those seen in terminal patterns, differ from the needs of someone cancer, and hospice took the referral, whose dying follows a sudden trajectory. (See Figure 4 and Table 6.) called us back, and said they weren’t Figure 4. Systems of Care going to take her because she lived in a Patients with Terminal Illness, Organ Failure, bad end of town in a motel, and was, or Frailty Trajectory Patterns* they thought, smoking marijuana. Of Clinics course, she had inadequate pain control, Offices and they felt that the situation would Physicians present, for them, an environment that Home ED wasn’t safe… They refused to take her Hospitals care and actually she subsequently went Home Care into the hospital, so sometimes we maybe Hospice Nursing Homes judge safety or make judgments that — Sub Acute Care I know we have to protect ourselves From home, patients enter the health care system (clinics, offices, emergency and that’s important, too. But I think departments, hospitals, nursing homes, or sub-acute facilities) for acute, emergency, or chronic care services to be referred to home care or hospice, or sometimes we also have to take a look at to re-enter other parts of the system, as needed and determined by gatekeepers (physicians). the reality of people’s lives and see what Patients with Sudden Death Trajectory Pattern we can do to provide compassionate Sub Acute Care care…” — DISCUSSION AMONG FOCUS GROUP ED PARTICIPANTS, FRESNO Physicians EMS DOA Community From the community or home, patients enter the health care system through the emergency department via EMS or other community-based conveyances. They may require emergency operating room or intensive care services prior to death. *Source: Morrison, R.S. Health care system factors affecting end-of-life care. Journal of Palliative Medicine. 2005; 8 Suppl 1:S79 – 87. 18 | California HealthCare Foundation Table 6. EOL Care Services Used, by Type of Death Trajectory EOL CARE SERVICE S U D D E N D E AT H TERMINAL ILLNESS ORGAN FAILURE F R A I LT Y EMT services √ √ √ √ Acute care beds √ √ √ √ Operating rooms √ √ √ Life-saving or extending measures √ √ √ Physician services* √ √ √ √ Drugs and biologicals‡ √ √ √ √ Family bereavement counseling √ √ √ √ Short-term inpatient care √ √ √ Skilled nursing care √ √ √ Home health care† √ √ √ Social services √ √ √ Patient counseling √ √ √ (dietary, spiritual, and other) Home medical appliances and supplies √ √ √ Patients enrolled in hospice… are eligible for these services under the Medicare Hospice Benefit. who use these services risk loss of Medicare Hospice Benefit. √ Services used by dying patients and/or their families. *Physician services include the range of primary and specialty care; eligibility for reimbursement varies based on conditions and coverage. For example, the Medicare Hospice Benefit covers most primary and palliative care provider services but not ineligible hospital, emergency, or surgical provider services. †Home health care includes homemaker services; home health aide services; therapy (physical, occupational, and speech); and inpatient respite care. ‡The Medicare Hospice Benefit will cover drugs and biologicals used for pain control and symptom management. Where Do Californians Die? Dying at Home Data reported here on California deaths in 2004 Approximately one-quarter of California deaths in from The Center for Health Statistics do not 2004 occurred at home. However, death certificate illustrate specifics of the so-called “salmon effect,” data does not provide sufficient detail to determine where non-native born Americans or immigrants what proportion of these home deaths were hospice living in California and using the state’s EOL care enrollees receiving skilled nursing, medical, and resources return to their home country to die.16 home health care consistent with hospice practices Among those who did die in California, the data vs. those who died at home without receiving these show broad patterns of home versus institutionalized services. Although some studies have reported home deaths.17 (See Table 7.) as the preferred site of death for many persons, this Table 7. Site of Death Among Californians (and Share of Total Deaths), by Racial/Ethnic Group, 2004 RACIAL/ETHNIC GROUP HOME* HOSPICE* H O S P I TA L NURSING HOME White 48,894 (29.7%) 1,489 (0.90%) 65,959 (40.0%) 37,376 (22.7%) Latino 8,083 (24.0%) 300 (0.89%) 18,827 (55.8%) 3,542 (10.5%) Asian American 2,488 (22.7%) 83 (0.76%) 6,115 (55.8%) 1,697 (15.5%) African American 4,164 (22.4%) 123 (0.66%) 10,625 (57.1%) 2,377 (12.8%) *Data obtained from death certificates was recorded as either death occurring in a licensed hospice facility or in a decedent’s home; therefore, some home deaths may also be hospice deaths. Source: Center for Health Statistics, Death Statistical Master Files. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 19 finding conflicts with reports on the desire among “…if we want to change the culture of hospice, some groups (African Americans and Latinos) for it has to be viewed as we are giving the family resource-intensive, life-saving interventions that can something instead of taking away treatment… only be administered in institutional settings.18–21 It is only going to be for this little bit, you know, Dying in Hospice and Palliative Care why not palliation, radiation, for a little bit? Settings Why not chemo for a little bit? Because Medicare To date, only two models of service delivery have focused almost exclusively on dying patients only has a certain set of money for this, but the and their families. Hospice, considered the gold more innovative hospices out there are getting the standard for care of the dying, and palliative majority of the patients because they know it is medicine (sometimes referred to as comfort care) only going to be for this much, for this long. So are philosophies of care as well as a spectrum of structured services. While both can be offered across maybe changing the hospice view about taking settings, from home to skilled nursing to inpatient everything away, maybe more people will give facilities, only the former, hospice, is eligible for into it more instead of two weeks before, two days federal reimbursement through the Medicare Hospice Benefit.22, 23 before, maybe they will join up a year before.” — FOCUS GROUP PARTICIPANT, LOS ANGELES The regulations associated with this benefit, notably, have been shown to create barriers to care for some racial/ethnic populations. For example, An alternative to the limits of the Medicare Hospice the requirement of a prognosis of six months or Benefit is private insurance coverage for palliative less and the agreement to waive Part A Medicare care services. However, this is not uniformly benefits (which may include curative treatments) available. Patients who are unable to afford private in order to enroll in hospice may run counter to insurance may receive charity (unreimbursed) African American and Latino general preferences hospice care at some not-for-profit and freestanding for resource-intensive, life-prolonging therapies hospices.25 that are not covered under the Hospice Benefit. Hospices, particularly smaller independent programs, may institute restrictive admission policies such as not admitting persons who are unwilling to forgo “Sometimes it can get difficult when there hospitalization or those who receive or would request are financial considerations. Some insurance complex medical care (including artificial feeding, or companies have a very limited benefit and so chemotherapy).24 These practices may conflict with some people who were dying and who do a lot culture-based preferences. of reading and research on hospice, those people, some people with private insurance don’t get the benefits that the people with [other kinds of] insurance do. So talking to families and they say, ‘Well, what about this’ and [you have to reply], ‘Sorry, your insurance doesn’t cover it.’ It can be very difficult, very uncomfortable.” — FOCUS GROUP PARTICIPANT, LOS ANGELES 20 | California HealthCare Foundation In our focus group discussions, the authors heard quality of training or interpretation, the availability of hospices that may discriminate against patients and accessibility of services (24-hours; weekends), because of staff fears, stereotyping, and prejudices, nor how these services are delivered (in-person vs. which can be compounded by the lack of resources telephone). to provide culturally appropriate care. Nationally, ethnically diverse persons are still less Other barriers to hospice use may include lack of likely than Whites to use hospice.27–29 Similarly, culturally and linguistically appropriate services. This California still faces challenges to improving access. problem has been laudably addressed in California. Data from 2004 30 show that the percent of Latino, (See Figure 6.) In a survey of 149 hospices across Asian American, and African American patients who the state, investigators found that many programs died in hospice was 15, 4, and 6 percent of the total are making efforts to serve the needs of ethnically hospice deaths, respectively, compared to 74 percent and racially diverse patients, offering such services as for Whites. translation, ethnically/racially diverse providers and volunteers, and faith-based services. Larger hospices Furthermore, most deaths for all immigrants and those located in multi-ethnic communities have occurred in in-patient hospital settings. Few used been shown to be more likely to offer culturally hospice for their EOL care needs. This may reflect, appropriate services than those in mostly White in part, lack of eligibility for hospice benefits; it may communities. Smaller hospices in the state that are be due to lack of cultural acceptance of hospice; unaffiliated with large chain operations, however, or it may indicate other cultural trends (such as are less likely to provide these services than larger the “Salmon effect,” mentioned earlier, where hospices.26 It should be noted that survey responses immigrants return home to their native countries regarding the use of translation or interpreter services to die 31). do not reveal quality indicators of these services. Survey data do not reveal information about the Figure 6. Culturally Appropriate Services in California Hospices* Transition Currently Furnished Minority Providers Plan to Expand Minority Volunteers Culturally Diverse Spiritual Directed Marketing 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% *Proportion that currently offer or are planning services that might affect minority participation. Source: Lorenz et al., Accommodating ethnic diversity. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 21 In addition, data on patterns of death (or death “I work in a [large hospital] so there is such a trajectories) suggest that hospice is not appropriate thing as length of stay. That is where the patient for all deaths. The hospice model cannot address has been here 67 days and [the administration the needs of patients and families dying from acute traumatic or other unexpected events — the pattern pressures us, asking] what are we doing to get of death that affects a disproportionate number of them out? What are we going to do to get them Latino, African, and Native Americans, as well as out? I stopped spinning my wheels when it comes Mexican immigrants. to certain cultures. Certain cultures you just let Dying in Hospitals, Emergency Depart- them be. They will die in the hospital. This is ments, and Skilled Nursing Facilities what they do. I used to get frustrated and wanted As the majority of deaths occur in hospitals and to find an angle [to get them discharged], but it nursing homes, it follows that most EOL work occurs primarily in institutional settings. Yet less than was only to please [hospital administrators].” half of California hospitals and fewer skilled nursing — FOCUS GROUP PARTICIPANT, LOS ANGELES facilities offer some type of palliative care service.32 In addition, given that a substantial number of deaths occur in emergency and intensive care settings Challenges to providing quality EOL care in where the focus of care is on acute, aggressive, life- both emergency and critical care settings include saving interventions, the needs of dying patients and “variability in practice, inadequate predictive their families may be compromised in such settings. models for death, elusive knowledge of patient preferences, poor communication between staff and surrogates, insufficient or absent training of health care providers, the use of imprecise and insensitive “How about the ones that I see in the emergency terminology, and incomplete documentation in the room who have advance directives and [the medical records.” 36, 37 emergency room staff] have gone ahead and intubated them?… Then the family members come in all sad and say why should they have an “[There was] an emergency room case: a male advance directive?” Latino minor came with a gunshot wound to — FOCUS GROUP PARTICIPANT, LOS ANGELES the head. The social worker was able to get the physician to come …to tell the family, ‘He’s in bad shape, we’re doing everything we can, but I Ethno-cultural Preferences. Some populations may don’t think it’s going to happen.’ At this point the prefer continued life-extending interventions even in light of conditions with limited prognosis.33 – 35 family was not allowed to see the minor, because As these treatments are usually delivered in hospital they didn’t want [them] to get in the way of settings, the honoring of this preference would whatever medical intervention was taking place. increase the likelihood of dying in hospitals — an outcome that may indeed meet the preferences of This mother sat in that [waiting] room for a persons who would rather die in an institution than period of about an hour with no other update at home. This suggests a further call for the need to on her son until about five minutes prior to his bring quality palliative care to hospitals, emergency death. The physician came out again and said, rooms, and nursing homes. 22 | California HealthCare Foundation ‘You know, it really looks really, really bad,’ and “I can remember an infant in a community this woman hadn’t seen her son throughout the downtown that was brought in. I think they whole ordeal. [The doctor] stepped out, and as he eventually decided the child had smothered… stepped out they pronounced him. Because of the We knew it was going to be a coroner’s case, and nature of the injury it became a coroner’s case so when the nurse called the coroner I actually asked it became an issue of, ‘Well, I’m sorry, Mom, but if I could talk with the coroner… and the police, you cannot see your dead son.’” also [about the needs of the bereaved]… So the — FOCUS GROUP PARTICIPANT, FRESNO coroner said… as long as no one touches the body, as long as a policeman is in the room [that it was OK]. Among recommended policies, the American College of Emergency Physicians has asserted the goal to “help patients and their families achieve “We made a big circle around that infant and greater control over the dying process” as a means prayed. Now maybe that coroner’s assistant (or to improve EOL care. As a part of that control, whoever because it’s not the coroner that actually families and loved ones need to be given the proper opportunity to grieve. One can only imagine the comes out) sort of bent the rules to do that… anguish experienced by the mother in the above Then again, it’s only anecdotal, and it could be story, compounded by a total lack of control in her that the next time something like that happened, son’s dying process. The legal mandate in forensic cases requires maintenance of the decedent’s body you know, talking to the coroner’s assistant and preservation of the resuscitation setting for wouldn’t do any good. It is very difficult with the forensic investigation. Reducing the victim to guidelines and the rules.” 39 “evidence” and the health care setting to a crime — SOCIAL WORKER, FOCUS GROUP PARTICIPANT, FRESNO scene, however, can severely impede quality of EOL care.38 Furthermore, EOL care does not end at death. Bereavement is an important part of the death and dying process. To address the needs of the bereaved, acceptable compromises should be sought by law enforcement and emergency personnel, as well as other health providers, whenever possible. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 23 IV. Factors Affecting EOL Care for Immigrants “The truth is that terminally ill patients Use of Health Services do not represent a health priority in this Recent studies on medical costs for foreign-born adults in Los Angeles County reported that immigrants — and undocumented country. There are other programs that immigrants in particular — use fewer health services than U.S.- have historically preoccupied (govern- born or resident citizens, and thus account for a smaller proportion ments more) from an epidemiological of public spending on health care than previously thought.41– 43 point of view, such as pediatric attention, Critics suggest that these studies underestimate the problem of immigrant health costs.44, 45 Nonetheless, the salient issue infection diseases, and also cardiovas- for palliative or EOL care needs is not the bottom-line costs cular problems. In consequence, there of immigrant care, but rather the conditions that influence the is big hole in terms of initiatives to patterns of care utilization associated with these costs. For example, Latino immigrants in California have low rates of measurable support projects directed towards pallia- health care utilization. Given high poverty rates among this tive care patients. In general, palliative group, these patterns may reflect lower expectations regarding the care programs have emerged in Mexico availability or benefits of health care. There are no reliable estimates as pain clinic projects. This means, that regarding patterns of use of alternative (i.e., folk) medicine. palliative care has become an extension Access to Insurance and Other Public Benefits of the pain clinic and this has its pros A study on the need for universal health insurance reported that and cons [On the one hand, the already greater than 50 percent of uninsured adults in Alameda County are immigrants.46 Sixty-eight percent of undocumented Latinos in existent infrastructure has been used, but Fresno and 84 percent in Los Angeles were uninsured, compared palliative care projects have been satel- to 35 percent of Latinos nationally and 19 percent of all persons lites without their own specific power]. nationally.47 Newly arrived immigrants and those who have not Few places have a sector designated only been in the United States long are mostly uninsured and less likely to be insured compared with the U.S.-born population or long stay for palliative care to look after exclusively immigrants.48–50 this type of patients. There is only one place in Guadalajara that has received Consequently, immigrants may have lower rates of regular health care usage and use fewer preventive services than U.S.-born adequate governmental support; that is citizens.51, 52 Having adequate access to care is undermined by a the Palia Institute that cares for termi- range of factors besides lack of insurance.53 These include poverty, nally ill patients within the public sector. language and other cultural barriers, not understanding or having In the rest of the country, [palliative no knowledge of available programs, and fear of disclosure of undocumented status. The longer an immigrant has resided in care programs] are inserted within other the United States, the less effect these factors have on rates of projects and the governmental support is insurance: the more integrated immigrants become in society, not very evident so far”.40 including increased English proficiency, the better able they are to understand the process for accessing public benefits. In addition, — INTERVIEW TRANSCRIPTION EDITED BY DR. ARGELIA LARA (9-29-04) many older immigrants in California arrived before 1980 (two- 24 | California HealthCare Foundation thirds of the state’s immigrant seniors) and may have Views Toward Palliative Care — become eligible for Social Security and other public an Example benefits.54 There are at least three parties affected by and responsible for shaping trends and outcomes related Persons who are not U.S. citizens and who are not to health needs of the immigrant: the receiving considered qualified immigrants (such as Legal community (California or the United States); the Permanent Residents, refugees, and persons with immigrant and his/her family and community; and asylum status) are not eligible for most federal and the originating nation or state.57 With regard to state health care benefits. However, they do have palliative care, it is important to understand how it access to emergency care or limited preventive is viewed in the immigrant’s home of origin. While services (such as immunizations) that protect palliative and hospice care have been embraced by the public health. In California, in addition to European and English-speaking countries, they are emergency care, immigrants are also eligible for less recognized in other countries for a variety of Medi-Cal long term care services and for limited reasons. They may not be formally recognized as cancer treatment under state breast and cervical medical disciplines. Organizational resources and cancer programs. They are not eligible for the funding structures for hospice or palliative care may Medi-Cal Hospice Benefit or for In-Home be limited or lacking altogether. The International Supportive Services. These services may, however, be Observatory on End-of-Life Care is a useful provided under some county health gap provisions resource to better understand how palliative care is or through charitable care in private sectors. understood and practiced in developing countries. In an interview available on the Observatory’s Web Despite availability of limited benefits, unqualified site (see pull quote on page 24), a palliative care immigrants use fewer standard health care services consultant at the Instituto Nacional de la Nutricion than qualified non-native or native U.S. populations. in Mexico, DF, Dr. Argelia Lara, discussed the place This problem stems from pressures mediated of palliative care in the national health system in through social and political institutions.55 As such, Mexico.58 there is a great need for advocacy to shape public policy for immigrant patients and their families. Documented misperceptions and stigmas regarding Unfortunately, identifying the needs of this palliative care in Mexico have included equating it population is hindered by access. The usual routes with euthanasia.59 Other cultural practices such as are limited when used to contact patients who may shielding terminal and other serious diagnoses from be ineligible for care. Access becomes even more patients further complicate acceptance of palliative difficult if patients have illegal status. Innovations care by Mexicans. If immigrants from Mexico carry in health insurance, such as cross-border programs their expectations and norms regarding health operating under the Knox-Keene Act approved care with them from their country of origin, the in 1998, or other alternatives, such as coverage misperceptions and the lack of priority of palliative provided under guest worker programs, may address care within Mexico may account for lowered some issues of access to care.56 expectations for this type of care when they arrive in the United States. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 25 V. Decision-Making “I was thinking about a Chinese patient Racially, Ethnically, and Culturally Appropriate who had an advanced cancer and there Care Planning EOL care is also influenced by the degree of certainty that one is had been an order to evaluate for hospice. indeed dying and by the predictability of the timing of death.60 In talking with the daughter, she was These uncertainties can give rise to challenges in decision-making extremely protective of her father and felt or become the source of ethical quandaries related to EOL care that she did not want him to have any delivery that all persons may face, regardless of racial/ethnic or cultural background. The response from all parties involved — bad news, though he knew what was patients, families, primary providers, clergy, ethics consultants, wrong with him.” specialists, and other health care personnel — may be influenced by their own values, beliefs, and worldviews. This may be the source of potential conflicts among groups that don’t share “We had a long conversation about how similar values. Most tools of bioethics practices in U.S. health we were going to do hospice in the home care settings, grounded in the worldview and value system of without him knowing that. She felt her the dominant Western society, benefit patients who are English- role was to protect him, and so was trying speaking, educated, empowered, individual-minded, and desirous of autonomous control over their lives.61 Conflicts often arise to deal with that and provide him with over disagreements or uncertainty about medical care when these good care.” practices are imposed on patients and families who do not fit that profile. “The daughter was a very high-powered Most studies on and interventions for decision-making address businesswoman, very urban, and yet situations that arise or are needed for terminal and, more recently, there were these values from her culture for chronic and frailty trajectory patterns. Few efforts have that kind of took over and it was kind addressed decision-making needs for sudden trajectories.62 of a conflict. She knew this wasn’t how western society would do things, but she Case Study A Latino male, appearing to be in his 20s, was found in the street had to do it that way.” severely beaten and comatose. He was brought by ambulance to — FOCUS GROUP PARTICIPANT, LOS ANGELES the nearest emergency room, a large university hospital. He had no identification, and police had no information about who he was or what had happened. After emergency room physicians found a serious head injury, the patient was stabilized and admitted to the intensive care unit. He remained in a coma and was considered a “friendless incompetent,” a person without known family or friends to act as a surrogate decisionmaker. No guardian had been obtained for the patient when his condition began to deteriorate, presenting a quandary for the medical staff regarding decisions for medical interventions. 26 | California HealthCare Foundation Although American bioethics theoretically considers Advance Planning and Cultural withholding and withdrawing futile interventions Diversity morally equivalent, in practice, especially in Advance planning is considered an important process emergency settings, persons delivering care in through which patient values and preferences for emergency or urgent situations may not see them care at the end of life can be made known to persons as equal.63 Emergency personnel are trained to delivering health services in emergency rooms, act quickly to administer life-saving interventions hospitals, skilled nursing facilities, and at home. Like and may need to make rapid decisions without hospice and palliative care programs and services, the benefit of knowing patients’ wishes or values. efforts to increase advance care planning have Without the benefit of time to deliberate or to been directed at persons for whom there may be determine patient preferences or beliefs, decisions to predictable patterns of decline (older persons, those deny or withhold an intervention that may hasten with chronic disease or cancer). However, given death may feel more morally problematic than a the patterns of abrupt death for all Californians, decision to withdraw that care later on. Furthermore, but particularly for younger multi-ethnic persons working in resource-constrained environments with who are at risk for sudden, traumatic death, there patients whose languages or values differ from one’s is an advantage in knowing decision preferences own can compound the challenges in decision- (including identifying proxies or surrogates to making. make decisions) in advance before families face the overwhelming agony of having to make treatment decisions suddenly. However, it may be considered culturally inappropriate or undesirable among some communities and families to plan for or to discuss death in advance. Case Study A 69-year-old Vietnamese man arrived at a large urban emergency room in respiratory distress, possibly in need of emergency intubation. While reviewing his medical records, doctors discovered that he had been recently diagnosed with metastatic lung cancer and recommended for hospice. The family had come with the patient; however, the only English-speaking member was a 9-year-old daughter, and the hospital translator would not be able to arrive at the ER for another 30 minutes. The patient’s condition worsened, and the doctors could not wait. Asking the daughter to translate, the attending physician asked if a do-not-resuscitate (DNR) status had been decided. The family, anxious and confused, said, “No.” The daughter explained their belief that the patient had a “lung problem” and was only coming to the hospital to get treatment. When the official translator from the hospital arrived, resuscitative efforts, short of intubation, had been going on for over thirty minutes. The medical staff, through the translator, attempted to discuss the previous recommendations for comfort care that had been made by the oncologist who had diagnosed his lung cancer. The patient was dying and a decision needed to be made regarding intubation. The wife replied that she could not make that decision. It had to be made by her husband’s father or brother and neither would arrive for another hour. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 27 “Yes, I find that in the African American, as well attitude about them. Mexican and Korean Americans as the Asian cultures, usually the family [doesn’t held the highest negative attitudes. Few in any group actually had completed an advance directive. want to] talk about putting it in writing. That family will come to an agreement if it comes to Respect for cultural diversity does not necessarily that point and the kids will decide what should mean that one should abandon practices that can enhance care. The goals and intentions behind be the best way to go. I think that basically, they advance planning are worthwhile; however, are holding on to believing that the person will studies and commentaries on its use in multi- get better. They will not die. They will improve. ethnic populations have suggested that current But if they put it in writing, then that it is sort of implementation practices focusing on written documentation leave little room for compromise. like you hasten the death.” As authors of the study on multi-ethnic seniors in — FOCUS GROUP PARTICIPANT, LOS ANGELES Los Angeles concluded, “rather than focusing on increasing the completion rate of formal advance directives, we need to listen to the diverse voices A study among European, Mexican, Korean, and of the communities we serve and then adapt our African American elders conducted in Los Angeles practices to fit their needs better.” 65 in the mid-1990s showed variations in knowledge, attitudes toward, and completion of advance Culturally appropriate alternatives are also needed directives.64 (See Figure 7.) European and Mexican beyond translating educational materials and legal Americans were most likely to know about advance forms into multiple languages. Advance planning directives. However, while African Americans were concepts also need to be interpreted into culturally the least likely to know about them, once told appropriate and acceptable goals and strategies. about advance directives, they held the least negative Community-based approaches to advance planning Figure 7. Advance Directives: Cultural Differences by Ethnicity 69% European Americans 31% 28% Knowledge of Negative Attitude Toward 12% Possession of (in writing) African Americans 19% 2% 47% Mexican Americans 66% 10% 13% Korean Americans 69% 0% Murphy et al., Ethnicity and advance care directives. 28 | California HealthCare Foundation that have their origins within the community and This project illustrates a more culturally synchronous reflect the values and perspectives of particular way to promote the goals of advance directives, ethno-cultural groups may be more successful in stressing the role of relationships valued in meeting the goals of advance planning.66 sociocentric cultures (in contrast to the role of autonomy and the value of cognitive-based strategies stressed in Euro-American society). The Ethnic Health Institute: Find a Friend — A Model Project In partnership with community organizations, the Ethnic Health Institute (EHI), a community outreach program of Alta Bates Summit Medical Center in Oakland, developed and implemented a replicable, culturally appropriate alternative to traditional advance care planning for African Americans. After studying what was known nationally about problems with advance directives among African Americans, project leaders conducted focus groups with members of the local African American community to determine alternative approaches that could meet the needs of both the community and health personnel. Findings showed that in this community it was more appropriate to shift the emphasis away from expecting individuals to identify desired preferences in various EOL scenarios (with the idea that these preferences would then be written into a legal document). Alternatively, individuals should simply find a family member or trusted friend with whom they could entrust their values, in general. One of the slogans used in this project was the following: “To love someone is to learn the song in his heart, and to sing it when he has forgotten it or can no longer sing it himself.” The campaign became, “Find your friend and then tell them what is important to you.” The focus was on clarifying values through real conversations about the individual’s life, not about hypothetical future scenarios related to death. Project leaders adapted questions from the Values History Form developed at the Institute for Public Health Law at the University of Mexico School of Law and provided them as guides for recommended conversations. EHI recruited African American physicians, clergy, and community (lay) persons, trained them to implement this work in the community, and then held several events to promote the project to wider audiences. Their goal has been to increase the number of proxies who might be better prepared to make informed decisions should the need arise. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 29 VI. Pain and Symptom Management Issues “A young Middle Eastern man who had Ethno-Cultural Issues uncontrolled pain ended up requiring Quality palliative EOL care requires aggressively addressing pain and symptom control. The landmark SUPPORT investigation medications in a dosage that I had never (Study to Understand Prognoses and Preferences for Outcomes seen before and the pharmacies had and Risks of Treatment) pointed to the failure of providers and never seen. They had never experienced the health care system in general to insure that patients would not anything that bad. Due to some cultural suffer serious pain in their last days of life.67, 68 concerns, the family refused to have the The psychological, spiritual, or existential meanings given to pain medication increased to the amount and suffering, its forms of expression, and acceptable approaches where the hospice believed the patient to its amelioration are, among other things, culturally mediated factors. In addition, there are interethnic differences in the would be more comfortable. So the metabolism and pharmacodynamics of drugs used in palliative hospice believed that the patient suffered medicine. Studies showing that minority patients routinely receive unduly and it was a challenge.” inadequate analgesia, including palliative treatment for cancer- — FOCUS GROUP PARTICIPANT, LOS ANGELES related pain, highlight the need for both cultural sensitivity and competence in the areas of palliative and EOL care. Physician Education Missed Opportunity: AB 487 and Racial/Ethnic Disparities On October 4, 2001, California signed into law AB 487, the Pain Management and the Appropriate Care and Treatment of the Terminally Ill bill that requires California-licensed physicians to complete 12 units of continuing medical education (CME) in the subject of pain management and palliative care. The requirement is time limited: physicians licensed before 2002 are given until December 31, 2006 to complete this one-time requirement; physicians licensed in or after 2002 are mandated to complete the 12 units within four years or by their second license renewal date. 30 | California HealthCare Foundation courses offered through the University of California Background system, were examined. The authors also included The bill was originally introduced by former a convenience sample of CME courses offered by Assemblymember Dion Aroner, who two years private vendors. earlier had unsuccessfully introduced California’s Death with Dignity Act (AB 1592) that would legalize physician-assisted suicide. Among the What’s missing? Few courses included any content advocates against AB 1592 were coalitions of on critical ethno-cultural factors that are associated medical and hospice organizations and groups with improved or worsened outcomes for seriously ill representing ethnic communities and the poor, or dying patients. Given the documented racial and who were concerned that the bill would not ethnic disparities in providing adequate treatment address more pressing EOL care needs, primarily for pain, this was sadly a missed opportunity for the lack of adequate knowledge among medical providers of documented race/ethnic-based addressing the palliative care needs for multi-ethnic disparities in pain management. patients and families. In June 2001, an Alameda county court awarded $1.5 million to the family of William Bergman, an In addition, there has been little to no oversight elderly cancer patient who subsequently died, regarding the quality of courses and content that but who had experienced extreme suffering and meet the requirements of AB 487. The California agony as a result of his primary physician’s failure Medical Board reported that there is no oversight to adequately treat his cancer pain. The physician organization that manages the content or quality of was judged to be in violation of the California CME courses. A spokesperson stated that as long laws against elder abuse. Lawyers for the doctors argued that their client had not received adequate as the course is offered by an accredited body and education on pain management in medical school includes the topic of pain management, palliative or in subsequent training.69 This case brought care, or end of life, as indicated in the course the issue of provider training in EOL care to objectives, it would meet the AB 487 criteria. The the attention of lawmakers and AB 487 was Institute for Medical Quality (IMQ) has been introduced with the intention of preventing future designated as California’s intrastate accrediting cases. agency by the nationally recognized accrediting agency for continuing medical education, the Accreditation Council for Continuing Medical AB 487 has been heralded as “a very extraordinary Education. IMQ, on behalf of the California step…to address what is clearly an enormous Medical Association (CMA), accredits California- problem.”70 It has also been called a model for other based hospitals, ambulatory care clinics, specialty states to follow. It may be a novel and laudable societies, health plans, and other health care organi- effort to improve quality palliative care and pain zations on a voluntary basis to offer Category 1 management in general, but the state has failed continuing medical education credit. Physicians who to show leadership in addressing racial and ethnic attend courses offered by IMQ/CMA accredited disparities in EOL care. The authors examined providers meet the Medical Board of California’s the curricula offered in courses approved for credit Division of Licensure requirements for physician toward the AB 487 requirement to determine licensure and receive credits towards the American the percent of ethno-cultural content. As the Medical Association’s Physician’s Recognition requirement can be satisfied through any hospital Award and the California Medical Association’s or organization nationally that offers accredited Certification in Continuing Medical Education. A CME units, it was not possible to analyze the entire representative of IMQ/CMA stated that accredited universe of courses. However, all courses advertised providers are granted autonomy to create their by the Medical Board of California, as well as own CME programs. Like the California Medical Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 31 Board, IMQ/CMA provides no direct oversight or Racial/ethnic-related differences in health care regulation for meeting the AB 487 criteria. utilization and access have been well documented and account, in part, for some of the inequities in Second chances? The lack of accountability for pain management. Two key studies in New York addressing ethno-cultural aspects of pain and City and Michigan suggested that limited availability palliative care may or may not be addressed by of opioid-based pain medications in pharmacies new legislation passed in 2005: the Cultural and located within minority communities may account Linguistic Competency for Doctors bill (AB 1195), for poor outcomes in pain management among beginning in 2006, requires all CME programs to ethnic populations. After surveying 30 percent of contain a cultural competency component. This the pharmacies in New York City, investigators legislation may address the concern of inadequate found that pharmacies in predominantly Latino and education in ethno-cultural aspects of pain African American communities were less likely to management and EOL care if the state continues to stock sufficient quantities of opioid analgesics than mandate provider education in pain and palliative those in non-Latino White neighborhoods.72 care beyond the 2006 deadline. Otherwise, it may not, given the finding that community non-hospice or palliative care physicians would not voluntarily The Story Behind the NY Pharmacy Report obtain continuing education in topics related to Dr. Morrison, a geriatrician at Mount Sinai School death or end of life. of Medicine in New York, noticed a disturbing pattern among his elderly cancer patients. Although he had appropriately prescribed proper Pharmacies medications, including strong narcotics or opioid drugs for their serious cancer-related pain, many “I think in the very poor communities, there is of his Latino and African American patients would an issue about access to meds. They may get the return for follow-up appointments stating that they had not been able to get their prescriptions filled prescription from the doctor, but then they go in for days at a time. their community to get morphine and some of The consequence of this was that patients would the pharmacies don’t carry it. Maybe there is a spend hours to days in excruciating pain, although medicine that could relieve their suffering had financial issue, too, some of these drugs are quite been prescribed. When he inquired as to why expensive.” they had delayed getting the prescriptions filled, the response was that they had gone to their — FOCUS GROUP PARTICIPANT, LOS ANGELES neighborhood pharmacy but that time and again they were told, “We don’t carry that.” As a result, he and his colleagues decided to Undertreatment of pain is prevalent, particularly investigate whether this was a random pattern, among the elderly, the poor, and patients who are or one that showed systematic discrimination racial and ethnic minorities. The reasons are complex against minorities residing in predominantly ethnic neighborhoods. What they found was only and multifaceted. The Institute of Medicine (IOM) 25 percent of pharmacies in Latino or African and National Academy of Sciences (NAS) assessed American neighborhoods had opioid supplies that the inequities in delivery of health care services to were sufficient to treat patients in severe pain, minority populations in a report published in 2002 as compared with 72 percent of pharmacies in and verified that, remarkably, racial and ethnic predominantly White neighborhoods. minority patients were undertreated for all types of pain, across all health care settings.71 32 | California HealthCare Foundation A more comprehensive investigation in Michigan Fresno city limits, the authors wondered whether provided similar results to the New York study, or not there were differences in the prescription finding that pharmacies in non-White areas of pain medication supply across the neighborhoods of Michigan were 52 times less likely than pharmacies Fresno. If differences did exist, they wanted to assess in White areas to have sufficient opioid supply.73 the reasons for such differences. Further, corporate chain pharmacies were less likely than independent stores to have sufficient pain After obtaining IRB approval, the authors contacted medication supplies. Differences on the basis of all 84 independent and chain pharmacies in Fresno pharmacy type suggested variability in pharmacists’ County. Although only 44 percent responded decision-making. Both of these studies illustrate (n=37) to survey questions regarding availability of important system-level barriers to accessing adequate three tiers of pain medication (following the World pain medication in minority communities. Health Organization’s Pain Ladder for treating mild to moderate to severe cancer pain), information on Access to Pain Medication in market and neighborhood attributes was available Neighborhood Pharmacies of Fresno for all 84 pharmacies. This enabled the authors to impute data regarding adequacy of stocks for the “I think I would say that probably [there is a missing pharmacies. (See Appendix C Sample Survey problem with availability of pain medicines in in the supplemental report.) pharmacies].” In summary, the authors found no statistical association between neighborhood ethnic “If we have a patient that goes home and needs composition and adequacy of stock among the 37 a medicine in a certain part of town… the surveyed pharmacies. The number of pharmacies surveyed without adequate stocks of pain pharmacy doesn’t have that.” medications was 7 out of 37 (19 percent). They — FOCUS GROUP PARTICIPANT, FRESNO, CALIFORNIA imputed that an additional 15 pharmacies (for a total of 26 percent) would be without adequate stock. (See Table 8.) The significant attribute for The authors were interested to find out if the data both collected and imputed data to predict adequacy obtained in New York and Michigan were applicable of stocks was whether or not a pharmacy was a small to areas in California. The city of Fresno was studied, independent store or part of a large chain. In this based on statements made during focus group small study, corporate-based chain stores were more sessions with non-physician health care providers likely to carry sufficient stores of pain medications there, suggesting that some of the minority patients than independents. This finding was the opposite of were not sufficiently treated for pain, and that those the results from the study conducted in Michigan, patients may have had difficulty filling prescriptions which found that corporate pharmacies were less for pain medications at their local pharmacies. likely than independents to carry sufficient opioid Fresno was also selected as the study site because analgesics.74 it is a racially diverse city, with approximately 40 percent White and 60 percent non-White residents, and was recently reported as the number one city for concentrated poverty in the United States (pre- Katrina New Orleans was second on that list). As there appeared to be clearly defined boundaries between poor and non-poor neighborhoods within Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 33 TABLE 8. Adequacy of Pain Medication Stock, “There are two major reasons why pharmacies Independent vs. Chain Pharmacies might not stock pain meds: first, they are so SURVEY IMPUTED PHARMACY TYPE R E S U LT S R E S U LT S expensive. It costs a lot for us to get them into Independent 23.33% (n = 7) 20.97% (n = 13) the store. Second, reimbursement is really low on Chain 76.67% (n = 23) 79.03% (n = 49) drugs like Oxycontin. For example, a prescription p = 0.01 p <0.001 of Oxycontin may cost $2,300, and our reimbursement is $28. We have to absorb the rest Our qualitative data may explain this difference. Independent pharmacists in our sample were of the cost. So it’s a lose-lose situation.” concerned about crimes related to burglaries and diversion. In 2004, a string of robberies of small “I used to own two independent pharmacies pharmacies in Fresno may have dissuaded local pharmacies from stocking opioids and other before going bankrupt… Pharmacies, especially Schedule II controlled substances. independents, may not be able to afford stocking a lot of pain medications... The new Medicare program makes everything more accessible to “About a year and a half ago there were some everybody but with less reimbursement and pharmacies held up at gunpoint in Fresno because therefore less profitability for pharmacies, it’s just people were trying to steal Oxycontin. It got so too expensive.” bad that many pharmacies began putting signs — COMMENTS FROM INDEPENDENT PHARMACISTS in their store windows that said, “We don’t carry Oxycontin.” Lastly, pharmacist bias may have accounted for — PHARMACIST, FRESNO, CALIFORNIA differences in stock at small pharmacies. In addition to fears of crime, some individuals held negative feelings based on stereotypes against certain ethnic Other reasons for the discrepancy between groups. independents and chains may be related to costs. Pharmacists reported that the costs of drugs like Oxycontin and Fentanyl used to treat serious pain were high, while reimbursement through Medi-Cal or Medicare was low. Unlike chain stores that can shift stock among other stores within the chain, independents must absorb the costs of unused drugs that eventually expire. 34 | California HealthCare Foundation “A young guy just walked out because I wouldn’t Conclusions fill his prescription. He had chains all over his Although independent pharmacies in other California communities 75 and nationally 76, 77 have clothes and more gold around his neck than I been shown to be more community-responsive than have in my entire house...” corporate-based chain stores, this trend may not be present in Fresno. A past history of pharmacy-related crimes and factors related to socioeconomics seems “I don’t think the issue is that the ’poor‘ people to have influenced differences in the availability don’t have access. I have no sympathy for the of pain medications for Fresno residents. It would bleeding hearts who think that Medicaid is the be useful to conduct a statewide investigation to best health care out there. These people don’t pay identify other areas in California where availability might be problematic. Qualitative statements made anything for their Vicodin.” by pharmacists in the Fresno study, however, raised other concerns regarding cultural sensitivity and “We only serve the Asian population who don’t competency. need many pain killers. ” In general, pharmacists are critical members of — COMMENTS FROM INDEPENDENT PHARMACISTS the health care team. They are gatekeepers for medications. They play a key role as liaisons between patients and their physicians, private and The limits of this survey study include its small government insurers, and other players in the health sample size. The universe of pharmacies in Fresno is care system. Most importantly, they provide front- only 84 stores. In addition, the reduced response rate line counseling on disease management as well was only 44 percent. Survey results based on missing as drug and non-drug therapies and devices.78– 82 data are subject to selection bias. The authors noted Despite their important role, they are not held that respondents to the survey differed from non- accountable in California to demonstrate cultural respondents in that non-respondents were more sensitivity or competency. Although pharmacists likely to be chain pharmacies or stores located in must complete 30 hours of continuing education minority neighborhoods. The authors’ less successful every two years in order to renew their license attempts to get chain pharmacies to respond may to practice in the state, there is no equivalent have been related to difficulties getting permission mandate to AB 1995, the Cultural and Linguistic from corporate officials to contact individual Competency bill for physicians, requiring continuing chain stores. As one pharmacist said, “There is a education programs for pharmacists to contain a [corporate] policy not to release any info regarding cultural competency component. on-hand quantity for controlled substances.” To account for the missing data, results were imputed using identifiable attributes (publicly available market and neighborhood information) about each pharmacy. Although imputed data tends to overstate the accuracy of results, trends were found regarding adequacy of stocks in chain vs. independent status that persisted for both collected and imputed findings. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 35 VII. Culturally Appropriate Communication “We mostly had problems with [using Communication and Language the] family for interpreting and obviously Ethnically diverse patient populations require a health care workforce that can provide culturally and linguistically appropriate we don’t know what they’re interpret- services such as those recommended by the U.S. Department of ing… [and later on we] find out they’re Health and Human Services Office of Minority Health.83 Obvious only interpreting half of what you’re communication barriers occur when patients and providers do not telling them. So now we tend to use the share the same language or when a patient speaks a dialect. AT&T Line [over-the-phone translation], In our observational study on interactions with EOL health care which is very impersonal, but now we’re among low-income seriously ill and dying African American finding problems with that just because patients and families, the authors found instances where inadequate communication resulted from a patient’s use of African American it’s an impersonal way of communicating, Vernacular English.84 Many times the doctors did not understand but there isn’t another way to do that.” what the patient was saying but did not seek assistance in having — FOCUS GROUP PARTICIPANT, FRESNO their exchange “translated.” In cases similar to this, although each party may not fully perceive what is being said, the need for translation may not be apparent. Varying populations differ in preferences for what information is conveyed and how that information is best delivered. Yet health care providers from culturally discordant backgrounds may lack guidance and skills on appropriate cultural and linguistic communication regarding EOL issues.85, 86 Trust and Trustworthiness in EOL Care The experience of many health care providers is that trust, or rather, mistrust, among most ethnic populations is a common and serious barrier to effective care and communication.87–91 But trust and mistrust are not simplistic, solitary concepts, and it may not be helpful to place the problem of lack of trust solely onto certain groups or individuals from these groups. Rather, these concepts represent complex processes that develop in relationships and in response to events. Trust may result from trustworthiness or perceived trustworthiness; therefore both sides of the relationship — the one who trusts and the one who is trusted — bear some responsibility for the outcome of interactions. The authors consider trust or mistrust in the context of medical encounters as referring to at least three distinct conceptual frameworks that characterize interactions between patients and providers.92– 94 These include: (1) entrusting the fiduciary 36 | California HealthCare Foundation relationship — trust that the provider or institution “The [doctors] in jail, whew, they ain’t no good. will look out for the patient’s best interest; (2) Their knowledge is very limited and it just ain’t confidence in competence — trust in provider skills no place to be if you’re sick.” and knowledge; and (3) perception of provider or institution’s interpersonal trustworthiness — trust in the humanistic, altruistic motives evidenced by “Now the [private] hospitals, …of course if you’re acts of empathy, credibility, or reliability. Mistrust able to pick and choose where and who you can be defined similarly: the perceived lack of any of these attributes could engender mistrust that the want… the doctors I’ve worked with have been patient’s interest is at heart, that providers may be good. They’ve been really good… I mean, y’know, incompetent, or that they are uncaring or unreliable. I’m still alive and I’m healthy.” Distinguishing various dimensions of trust or mistrust provides a useful framework for action: without a clear understanding of what is implied by “This [county] hospital right here...it ain’t one of either trust or mistrust, it is difficult to identify what the best I’ve seen… It needs some work. I’ve been can be done by whom for its cultivation. in better… [but] the doctor [who cared for me Case Study 95 in the county hospital], now he was pretty good. Despite his young age, a 29-year-old African He was all right. He was a doctor and a caring American man had several chronic life-threatening individual at the same time. He spoke to me, illnesses. He was on dialysis for kidney failure and gave me information, made me feel I wasn’t going had previously suffered two strokes. He generally received his primary care at one of the elite hospitals to die.” in the Bay Area by arrangement through his mother, — PARTICIPANT IN STANFORD STUDY ON DYING a dialysis nurse. He had been arrested for marijuana possession and immediately, after being put in jail, began to vomit blood. He was initially taken to In the case example, the young man based his the prison infirmary, but was ultimately transferred attitudes of trust on his confidence (or lack thereof ) to the nearest county hospital as his condition in the competence of providers, distinguishing, worsened. He was admitted to that facility where, for example, between the doctors in jail, who he over the next two days, his condition stabilized. saw as incompetent, and the private doctors at the During this period, he agreed to participate in a elite institution where he gets his primary care. On study being conducted at that hospital to observe the other hand, his trust stance toward the care he interactions among seriously ill (dying and received at the county hospital was influenced by his potentially dying) African American patients and perception of being cared for interpersonally. health care providers. During an interview for the study, he was asked, “Do you trust doctors?” Rather Mistrust based on the perception of conflicting than responding with a simple yes or no, his answers interest is illustrated by a story told in one of our reflected the complexity of issues that need to be provider focus groups where a family felt that the considered regarding trust and trustworthiness in hospital was less interested in the care of the patient health care. and perhaps more concerned with the cost of his care. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 37 Case Study “When I walk in to discuss end-of-life issues with A Fresno health care provider tells of an elderly my own culture there is such a… comfort level. Hmong gentleman who came in for a fairly routine When I go into another culture, I don’t have surgical procedure. He was encouraged to become ambulatory soon after surgery. During his recovery, that same comfort level I have within my own he developed unexpected complications and needed culture.” to be transferred to the intensive care unit, ultimately needing to go on a respirator. The family became extremely distrusting of the hospital and medical “I think somehow, I am White, I am middle class, providers, feeling that the reason why he was having I do my very best when I am with any family or complications was due to the rush to get him up and any culture and all of that, but I would be naïve out of the hospital too soon. to say that there is not bias in the care. I mean Cultivating trust requires that all members of the because I am part of the majority race, I am not health care delivery system examine and shift the even aware of the biases. It is only when I get into focus of change onto their own trustworthiness: the minority that I recognize, ‘Oh yeah, so there is  The patients’ and families’ interest should the difference.’ So it is a difficult question. Again, be prioritized over any competing ones. It is I am going to do my very best to overcome the unethical to deliberate over costs when making treatment decisions at the bedside. This does biases that I have coming into a situation, but I not mean that providers should ignore their would be totally naïve if I really thought that I responsibility as stewards of limited health care was 100 percent successful all the time. I am not.” resources. However, decisions on how to allocate — COMMENTS FROM FOCUS GROUP PARTICIPANTS, resources should occur at system levels that LOS ANGELES include mindfulness of what is in the best interest of all patients.  Regarding trust as confidence in competence, it is The 2002 IOM report on disparities in health care imperative to cultivate a community of providers cited bias and stereotyping by providers toward at every level of health care who are skilled and racial and ethnic groups as a potential contributor knowledgeable in EOL and palliative care. to disparities in health outcomes.96 In our Stanford observational study on interactions with EOL  Patients and families are more likely to feel cared health care providers among low-income seriously ill about when approached in a manner that conveys and dying African American patients and families, humanistic concerns, including compassion, the authors found that miscommunication and empathy, and honesty. This may require providers mistreatment of patients by providers was not likely to honestly examine negative attitudes that they the result of overt, conscious, or intentional acts of may hold implicitly and explicitly toward certain racism by the providers, but rather appeared to result populations and to eliminate behaviors that may from burnout.97 Tremendous burdens were placed be deemed discriminatory. on the public health facility the authors studied, including serious service reductions that, in turn, Although California is a multicultural state, overwhelmed the workload of otherwise dedicated not everyone is comfortable acknowledging health care workers. This finding is consistent with or appreciating and valuing these differences. the IOM report citing implicit bias — that which is Statements made by providers working in hospitals, not a part of an individual’s conscious awareness — as nursing homes, and hospices highlight this finding: 38 | California HealthCare Foundation a source of discriminatory or biased acts that may that address a range of critical issues. A good surface when individuals are exposed to stressful resource is the ACCESS curriculum, an innovative situations. comprehensive EOL training program developed in San Francisco. Preparing a workforce to provide equitable, competent, and culturally and linguistically appropriate EOL care will require training models RESOURCE FOR CULTURALLY APPROPRIATE EOL CARE TRAINING ACCESS: The Visions Model for Training in Culturally Appropriate EOL Care ACCESS to EOL Care is a community training organization dedicated to improving the quality and accessibility of culturally appropriate EOL care for underserved communities. The organization was formed in San Francisco in 1997 by a group of experienced hospice nurses, social workers, and administrators who expressed concern that certain communities of people were not being adequately served at the end of their lives. ACCESS provides education about death, dying, and grieving through seven interactive educational modules presented from a multicultural, holistic perspective. The ACCESS curriculum includes modules on: • Frameworks for Multicultural End-of-Life Care (the Visions model) • Symptom Management from a Multicultural Perspective • Bioethics and Multiculturalism at the End of Life • Honoring Spiritual Diversity in EOL Care • Grief and Bereavement in a Multicultural Setting • Caring for the Health Care Providers • An Organizational Response to Meet the Needs of a Diverse Clientele What is unique about ACCESS? It presents basic concepts needed for competency in EOL care in the VISIONS framework of multiculturalism. The ACCESS program is administered through VISIONS Inc., a nonprofit enterprise that has over 20 years of experience in supporting health service organizations, communities, and individuals in the development and maintenance of a multicultural perspective. The unique, research-based VISIONS training model helps overcome barriers to communication, relationship-building, and organizational development caused by cultural misunderstandings and apprehensions. It does not simply provide information, but fosters empowerment for individuals and organizations to make meaningful and longstanding change by helping participants develop strategies for education, advocacy, and support around issues of organizational transformation. It helps organizations and individuals create environments where differences are recognized, understood, appreciated, and leveraged to achieve greater productivity, and where all can perform to their full potential. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 39 VIII. Effect of Immigration on EOL Caregiving More than a quarter of California’s Immigration patterns affect overall demographic nurses are foreign-educated, compared to population shifts in unique ways. Some demographers suggest that the twin factors of the “graying of America” along with increases only 5 percent nationally. in numbers from immigrant populations will have an additive, aggravating effect, thus increasing burdens on limited health resources; others suggest that the effects will be complementary.98 The latter argue that immigrants, who are generally younger and of working-age, will contribute additional resources such as taxes and other Social Security benefits to be paid into Medicare and other public programs that will benefit the elderly. In addition, these workers will increase the ranks of the health care workforce, including home health and long term caregivers, who will serve the needs of aging Americans.99–102 Increasingly Immigrant Workforce While immigration has extensively diversified California’s patient population, it has also diversified the state’s health care labor force. The effect of immigration on the health care workforce may be most apparent in the nursing profession. Although foreign- educated nurses are practicing in all fifty states, California has the highest percentage of practicing registered nurses (26 percent) who are foreign-educated. (Florida, the state reporting the next greatest percentage of foreign-educated RNs, has less than 10 percent).103 Overall, nurses who received their basic nursing education outside of the United States constitute about 5 percent of the U.S. nursing labor force, and the proportion of newly licensed RNs who are foreign-educated has been on the rise since 1998, exceeding 14 percent in 2003.104 The Philippines is the largest supplier of registered and practical nurses in the United States, with 50 percent of foreign-educated nurses receiving their nursing education in the Philippines. Other countries serving as major sources of nurses include Canada, United Kingdom, Nigeria, Ireland, India, Hong Kong, Jamaica, Israel, and South Korea.105 The percentage of foreign-born nurses emigrating from various African countries is also on the rise. In 2000, 17 percent of foreign-born nurses practicing in long term care settings who had been in the United States for 10 years or less came from African nations, as did 22 percent of nurse’s aides.106 In addition, the U.S. Census estimates that 30 percent of low-skilled home care workers in the United States are immigrants, excluding undocumented immigrants caring 40 | California HealthCare Foundation for people in private homes.107 Workers trained in ability to have open communication about death countries where palliative care and hospice is not and dying with their health care providers.112 Such available or not a priority may lack appreciation of sentiments should be the priority in considering or skills and competencies in this field. assimilation training of immigrant health care workers entering the fields of EOL and palliative Factors Fueling Immigrant Workforce care. As increasing numbers of foreign health care A complex combination of factors both in the workers arrive from abroad, health care facilities United States and abroad are contributing to the must ensure that the needs of both patients and staff changing demographics of the health care labor are recognized and respected. Providing quality EOL force in this country. American-born women, care in an increasingly diverse setting will involve especially White women, are pursuing care-giving embracing the cultural differences and perspectives professions at lower rates than in the past. Between of patients and staff alike. In a state as racially and 1994 and 2002, the number of native-born ethnically diverse as California, an equally diverse nurses in the United States who were age 35 or health care workforce may be part of the solution to younger decreased from approximately 490,000 to improving access and communication, subsequently 380,000.108 Turnover rates for health care workers mitigating disparities in patient satisfaction and have been reported as high as 50 percent in some of quality of care. the nation’s long term care settings. Several studies report issues of low morale and job satisfaction, Communication skills are key to the successful which may be fueling such high turnover rates.109, assimilation of foreign health care workers into 110 In one study, nurses working in nursing homes the nation’s health care system. The effect that the expressed the lowest levels of job satisfaction among linguistic skills of immigrant health care workers may all medical settings, with only 65 percent expressing have on their ability to provide quality EOL and satisfaction.111 Low wages, limited opportunities palliative care is a multidimensional issue. Language for professional growth and advancement, and barriers may limit the deep and meaningful poor working conditions are among the reasons communications that serve as the foundations of women in developed countries are increasingly hospice and palliative care.113 While limited English choosing careers other than health care. This trend proficiency may negatively affect patient care and has created shortages in health care workers and hinder communication with patients, staff, and has subsequently opened up new job opportunities family members, foreign language skills may also be for immigrant populations. Like most immigrants a highly desirable asset in caring for an increasingly in general, foreign health care workers come to the diverse patient population. According to the 2004 United States in the hopes of improving their quality National Sample Survey of Registered Nurses, nearly of life and increasing educational opportunities for 70 percent of foreign-educated RNs speak at least their children. Many skilled health care workers one language other than English, most often Filipino also choose to leave their native countries due to (48 percent of foreign-educated RNs). About 4 inadequate health care infrastructures, technologies, percent of foreign-educated nurses speak Spanish, and limited opportunities for further training and and almost equal numbers speak French or an Asian career advancement. language other than Filipino.114 Language Issues A survey by the National Council of State Boards One national survey of patients receiving EOL of Nursing found that newly licensed foreign- care revealed that patients place great importance educated nurses were slightly more likely to have on having a comfortable and trusting relationship difficulties comprehending English-speaking clients with their physicians and nurses, and they value the or staff than were newly licensed nurses educated Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 41 in the United States, but they were far less likely positions requiring minimal contact with patients, to have such problems when dealing with non- such as housekeeping and kitchen services. These English-speaking clients or staff members.115 In workers are often able to advance into different one study of patient and family experiences with positions as their English skills improve, but not hospice care, respondents for whom English was all facilities take such careful measures.120 Based a second language emphasized the importance of on U.S. Census data, about 12 percent of nurse’s hospices staffing caregivers who spoke their ethnic aides in long term care settings reported that they languages.116 About 20 percent of California’s general could not speak English or that they had limited population self-reported limited English proficiency English skills.121 This may negatively affect patient in 2000, with the top three foreign languages spoken interactions and the subsequent quality of care in California being Spanish, Chinese (all dialects), received since most of caregiving time in long term and Tagalog.117 Thus, the assimilation of bilingual care facilities (60 percent) is provided by nurse’s health care workers, immigrants and non-immigrants aides.122 Health care workers with foreign accents alike, into California’s health care system, may may also have communication difficulties, regardless actually serve to improve communication barriers of their level of English fluency, and may face and narrow disparities in access to quality care. additional alienation and stigmatization in medical settings.123 Some patients have reported feeling Although foreign-educated RNs must demonstrate left out or ignored under circumstances where two English proficiency as part of the credentialing caregivers are speaking a foreign language to one process through the Commission on Graduates another while providing care.124 Communication of Foreign Nursing Schools (CGFNS), such barriers may frustrate the health care workers certification processes do not necessarily ensure themselves, as well as other staff members, but English language competency at the level necessary language issues may also affect patient perceptions of in a medical setting. Language differences in terms the care they are receiving. McElmurry et al. assert of medical terminology, medication names, and that “when patients have difficulty understanding abbreviations may serve as major communication a care provider, their trust or satisfaction with the barriers.118 According to the CGFNS, many migrant care provided will be affected, thus creating undue nurses also identify face-to-face and telephone dissatisfaction with nursing care.”125 conversations as difficult. Difficulties in accurately communicating patients’ conditions or changes in Discrimination their conditions could potentially delay appropriate An unfortunate outcome of the growing immigrant care or cause injury. Legislative efforts to bypass health care workforce is discrimination and racism the language skills assessment requirements by in the workplace, which may have a detrimental the CGFNS in order to expedite foreign nurse effect on job performance and satisfaction. One recruitment may have a harmful effect on the study exploring the experiences of Asian Indian delivery of care if medical errors occur as a result of female nurses who arrived in the United States miscommunication.119 after completing their nursing training in India describes various instances of racism from colleagues Another key issue related to language competency and supervisors.126 Immigrant health care workers in EOL care settings is the fact that foreign nurse’s may also experience discrimination, based on their aides and other unlicensed health care workers are foreign status, from patients and administrators. not subject to the same certification regulations and In one American nursing home in which over half English proficiency evaluations as foreign nurses and the staff is composed of immigrants, the director of other skilled health professionals. Some health care human resources reports that hostility is rare, but facilities offer immigrants with limited English skills patients may make derogatory comments or refuse 42 | California HealthCare Foundation assistance from an aide of another race. In addition, immigrant health care workers may face more subtle but equally devastating forms of discrimination, such as lower wages or reduced opportunities for career development and advancement.127 To prevent such discrimination and racism, health care facility assimilation programs must thoughtfully integrate new nurses into the existing culture while educating existing employees about the far-reaching benefits of cultural diversity.128 Immigration Status Issues While most skilled health care workers from foreign countries are eligible for special visas and often receive immigration assistance through recruiting agencies, unskilled health care workers have greater difficulties immigrating legally to the United States.129 In May of 2005, President Bush signed legislation making 50,000 visas available to foreign nurses.130 Similar immigration policies do not exist for unlicensed, unskilled workers such as nurse aides and medical assistants, although some national health care associations are lobbying for a new visa geared specifically to low-skilled and unlicensed workers, which would admit an additional 400,000 low-skilled workers into the United States annually.131 Unskilled heath care workers do not typically arrive in the United States with the intention of working in the health care field. As a result, a greater proportion of these workers may be undocumented, further increasing their vulnerability to possible exploitation in the workplace.132 The number of undocumented immigrants working as caregivers in licensed facilities, however, is thought to be low due to state regulations and heavy government monitoring of the field, including employee background checks.133 The private home-care market may subsequently have a greater proportion of undocumented immigrant caregivers. To help protect undocumented health care workers from workplace exploitation, many service employee unions accept health care workers regardless of their immigration status.134 Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 43 IX. Conclusion “When I was going through the… Although this project for the California Licensed Vocational Nurse program, they HealthCare Foundation had the goal of focusing on race, ethnicity, and culture in EOL care, one should acknowledge did a cultural [training] deal, and when a potential risk of convenience: while respecting difference they came to the Mexican American, among California’s various populations, there is always a risk of I thought, ‘You know, I’m Mexican essentializing groups and stereotyping individuals. American, and that doesn’t sound like By essentializing, that is to presume that all members of a group me, or my family, or my cousins, or are the same, one may fail to acknowledge that individuals my uncles, so I don’t know where you inhabit multiple socio-demographic identities simultaneously got your information, but you’re totally and that movement among these identities is fluid depending on need or the particularities of circumstances. It follows, then, wrong.’” that rarely is membership in a racial, ethnic, or cultural group — FOCUS GROUP PARTICIPANT, FRESNO the only factor influencing a particular patient and family’s response and needs for EOL care. Nonetheless, population trends and mortality patterns strongly suggest that attention needs to be paid to the complex phenomena of immigration as it relates to EOL care in California. Specifically, immigrants from Mexico, (particularly those who are undocumented and thus unqualified for benefits), who are young and important contributors to the workforce are at risk for dying young from trauma and accidents. While effective strategies and policy solutions for preventing these premature deaths are being devised, there still needs to be reliable access to and quality delivery of EOL care for patients and families through models of care appropriate to the trajectory of dying. Efforts that have been undertaken in the last thirty years since the advent of hospice to improve the quality of life and health care for dying persons should continue to receive support, including increasing the number of hospitals and skilled nursing facilities that offer palliative care. While the hospice movement provides standards for what is needed for compassionate quality EOL care, certain tenets such as home-based care or structures for reimbursement may not necessarily be culturally appropriate nor meet the needs of certain segments of California’s populations. Hospice is not the gold standard for all deaths. 44 | California HealthCare Foundation While the goal of this report is to focus on recommendations to improve EOL care for the state’s ethnically, racially, and culturally diverse populations, any efforts to improve care for all Californians will most likely have positive effects on the care of its multi-ethnic populations, as well. Conversely, efforts targeting care for diverse population groups — attending to and eliminating causes of disparities, creating and supporting culturally appropriate health delivery systems, improving processes of decision-making across cultures, addressing ethnocultural aspects of pain and symptom control, and generally improving communication and trustworthiness—will likely result in a care system that will benefit all of California’s residents. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 45 Endnotes 1. United States-Mexico Border Health Commission. of Older Persons. New York: Springer Publishing www.borderhealth.org/index.php. Company; Forthcoming. Accessed October 2006. 13. Lunney, J.R., J. Lynn, D.J. Foley, S. Lipson, and 2. California Office of Binational Border Health. J.M. Guralnik. Patterns of Functional Decline at the www.dhs.ca.gov/ps/dcdc/COBBH/. End of Life. JAMA. 2003;289(18):2387 – 2392. Accessed October 2006. 14. Chan, G.K. End-of-life models and emergency 3. Garza, A., A. Rodriguez-Lainz and I.J. Ornelas department care. Academic Emergency Medicine. I.J. The health of the California region border- January 2004;11(1):79 – 86. ing Mexico. Journal of Immigrant Health. July 2004;6(3):137 – 144. 15. Center for Health Statistics. Death Statistical Master Files. In: Services SoCDoH, ed: Office of Health 4. Crawley, L.M. Racial, cultural, and ethnic factors Information and Research; 2004. influencing end-of-life care. Journal of Palliative Medicine. 2005;8 Suppl 1:S58 – 69. 16. Palloni, A., and E. Arias. Paradox lost: explaining the Hispanic adult mortality advantage. Demography. 5. Center for Health Statistics. Death Statistical Master August 2004;41(3):385 – 415. Files. In: Services SoCDoH, ed: Office of Health Information and Research; 2004. 17. Center for Health Statistics. Death Statistical Master Files. In: Services SoCDoH, ed: Office of Health 6. Ibid. Information and Research; 2004. 7. Miniño, A.M., M. Heron, and B.L. Smith. Deaths: 18. Cantwell, P., S. Turco, C. Brenneis, J. Hanson, C.M. Preliminary Data for 2004. Health E-Stats. Released Neumann, and E. Bruera. Predictors of home death April 19, 2006. Hyattsville, MD: National Center in palliative care cancer patients. Journal of Palliative for Health Statistics. www.cdc.gov/nchs/products/pubs/ Care. Spring 2000;16(1):23 – 28. pubd/hestats/prelimdeaths04/preliminarydeaths04.htm Accessed June 26, 2006. 19. Evans, W.G., T.M. Cutson, K.E. Steinhauser, and J.A. Tulsky. Is there no place like home? Caregivers 8. Carr, D.D. Implications for case management: recall reasons for and experience upon transfer ensuring access and delivery of quality health care to from home hospice to inpatient facilities. Journal of undocumented immigrant populations. Lippincott’s Palliative Medicine. February 2006;9(1):100 – 110. Professional Case Management. July-August 2006;11(4):195 – 204. 20. Tang, S.T., and R. McCorkle. Determinants of place of death for terminal cancer patients. Cancer 9. Zuniga, E., S.P. Wallace, S. Berumen , and X. Investigation. 2001;19(2):165 – 180. Castaneda. Mexico-United States Migration: Health Issues: The Ministry of Health and the National 21. Blackhall, L.J., G. Frank, S.T. Murphy, V. Michel, Population Council (Consejo Nacional de Población- J.M. Palmer, and S.P. Azen. Ethnicity and attitudes CONAPO) of the Government of Mexico, towards life sustaining technology. Social Science and California-Mexico Health Initiative of the California Medicine. June 1999;48(12):1779 – 1789. Policy Research Center, Office of the President, 22. Lorenz, K.A., L.R. Shugarman, and J. Lynn. Health UCLA Center for Health Policy Research; 2005. care policy issues in end-of-life care. Journal of 10. Ibid. Palliative Medicine. June 2006;9(3):731 – 748. 11. Lee, R., and V. Villa. Population Aging in California. 23. Shugarman, L.R., K. Lorenz, and J. Lynn. End-of- Berkeley: California Policy Research Center; May life care: an agenda for policy improvement. Clinical 2001. Geriatric Medicine. February 2005;21(1):255 – 272, xi. 12. Hirschman, C. Immigration and an Aging America: Downward Spiral or Virtuous Circle? In: Schaie, 24. Lorenz, K.A., S.M. Asch, K.E. Rosenfeld, H. Liu, K.W., and Uhlenberg, P., eds. Social Structures: The and S.L. Ettner. Hospice admission practices: where EFFECT of Demographic Changes on the Well-being does hospice fit in the continuum of care? Journal of the American Geriatrics Society. May 2004;52(5): 725 – 730. 46 | California HealthCare Foundation 25. Lorenz, K.A., K.E. Rosenfeld, S.M. Asch, and 37. Carlet, J., L.G. Thijs, M. Antonelli, et al. Challenges S.L. Ettner. Charity for the dying: who receives in end-of-life care in the ICU. Statement of the unreimbursed hospice care? Journal of Palliative 5th International Consensus Conference in Critical Medicine. August 2003;6(4):585 – 591. Care: Brussels, Belgium, April 2003. Intensive Care Medicine. May 2004;30(5):770 – 784. 26. Lorenz, K.A., S.L. Ettner, K.E. Rosenfeld, D. Carlisle, H. Liu, and S.M. Asch. Accommodating 38. Chan, G.K. End-of-life models and emergency ethnic diversity: a study of California hospice department care. Academic Emergency Medicine. programs. Medical Care. September 2004;42(9): January 2004;11(1):79 – 86. 871 – 874. 39. Doorenbos, A.Z., and S.M. Schim. Cultural compe- 27. Jennings, B., T. Ryndes, C. D’Onofrio, and M.A. tence in hospice. American Journal of Hospice and Baily. Access to hospice care: Expanding boundar- Palliative Care. January-February 2004;21(1):28 – 32. ies, overcoming barriers. Hastings Center Report. 2003;March-April(Suppl):s3 – 60. 40. Clark, D. Palliative Care Service Provision: Reimbursement and Funding for Services in Mexico. 28. Adams, C.E., K. Horn, and J. Bader. Hispanic access www.eolc-observatory.net/global_analysis/mexico_ to hospice services in a predominantly Hispanic reimburse.htm. Accessed October, 2006. community. American Journal of Hospice and Palliative Care. January-February 2006;23(1):9 – 16. 41. Goldman, D.P, J.P. Smith, and N. Sood. Immigrants and the cost of Medical Care. Health Affairs. 29. Lackan, N.A., G.V. Ostir, J.L. Freeman, Y.F. Kuo, November-December 2006;25(6):1700 – 1711. D.D. Zhang, and J.S. Goodwin. Hospice use by Hispanic and non-Hispanic white cancer decedents. 42. Mohanty, S.A., S. Woolhandler, D.U. Himmelstein, Health Services Research. 2004;39(4 Pt 1):969 – 983. S. Pati, O. Carrasquillo,and D.H. Bor. Health care expenditures of immigrants in the United States: a 30. Center for Health Statistics. Death Statistical Master nationally representative analysis. American Journal of Files. In: Services SoCDoH, ed: Office of Health Public Health. August 2005;95(8):1431 – 1438. Information and Research; 2004. 43. California Immigrant Welfare Collaborative. 31. Chan, G.K. End-of-life models and emergency Immigrants and the U.S. Health Care System. department care. Academic Emergency Medicine. Sacramento, CA, September 2006. January 2004;11(1):79 – 86. 44. Federation for American Immigration Reform. 32. Pantilat, S.Z., and J.A. Billings. Prevalence and Immigration’s EFFECT on the U.S. www.fairus.org/ structure of palliative care services in California site/PageServer?pagename=research_research9605. hospitals. Archives of Internal Medicine. May 12 Accessed October 13, 2006. 2003;163(9):1084 – 1088. 45. Schmitz, R. New Healthcare Study Adds More to 33. Blackhall, L.J., G. Frank, S.T. Murphy, V. Michel, Chew on in Immigration Debate. KQED. November J.M. Palmer, and S.P. Azen. Ethnicity and attitudes 14, 2006. towards life sustaining technology. Social Science and Medicine. June 1999;48(12):1779 – 1789. 46. Ponce, N., T. Conner, B.P. Barrera, and D. Suh. Advancing Universal Health Insurance Coverage in 34. Crawley, L., R. Payne, J. Bolden, T. Payne, P. Alameda County. Los Angeles: UCLA Center for Washington, and S. Williams. Palliative and end-of- Health Policy Research; 2001. life care in the African American community. JAMA. 2000;284(19):2518 – 2521. 47. Schur, C.L., M.L. Berk, C.D. Good, and E.N. Gardner. California’s Undocumented Latino 35. Mebane, E.W., R.F. Oman, L.T. Kroonen, and M.K. Immigrants: A Report on Access to Health Care Services. Goldstein. The influence of physician race, age, and Henry J. Kaiser Family Foundation; 1999. gender on physician attitudes toward advance care directives and preferences for end-of-life decision- 48. Carr, D.D. Implications for case management: making. Journal of the American Geriatrics Society. ensuring access and delivery of quality health care to 1999;47(5):579 – 591. undocumented immigrant populations. Lippincott’s Professional Case Management. July-August 2006; 36. Chan, G.K. End-of-life models and emergency 11(4):195 – 204. department care. Academic Emergency Medicine. January 2004;11(1):79 – 86. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 47 49. Zuniga, E., S.P. Wallace, S. Berumen , and X. 59. Ibid. Castaneda. Mexico-United States Migration: Health Issues: The Ministry of Health and the National 60. Glaser, B.G., and A.L. Strauss. Time for Dying. Population Council (Consejo Nacional de Población- Chicago: Aldine; 1968. CONAPO) of the Government of Mexico, 61. Davis, A.J. The bioethically constructed ideal dying California-Mexico Health Initiative of the California patient in USA. Medicine and Law. 2000;19(1): Policy Research Center, Office of the President, 161 – 164. UCLA Center for Health Policy Research; 2005. 62. Chan, End-of-life models. 50. Wang, M., and J. Holahan. The Decline in Medicaid Use by Noncitizens since Welfare Reform. 63. Iserson, K.V. Withholding and withdrawing www.urban. org/url.cfm?ID=900621. Accessed medical treatment: an emergency medicine October, 2006. perspective. Annals of Emergency Medicine. July 1996; 28(1):51 – 54. 51. Zuniga, E., S.P. Wallace, S. Berumen , and X. Castaneda. Mexico-United States Migration: Health 64. Murphy, S.T., J.M. Palmer, S. Azen, G. Frank, V. Issues: The Ministry of Health and the National Michel, and L.J. Blackhall. Ethnicity and advance Population Council (Consejo Nacional de Población- care directives. Journal of Law, Medicine and Ethics. CONAPO) of the Government of Mexico, 1996;24(2):108 – 117. California-Mexico Health Initiative of the California 65. Ibid. Policy Research Center, Office of the President, UCLA Center for Health Policy Research; 2005. 66. Phipps, E.J., G. True, and G.F. Murray. Community perspectives on advance care planning: report from 52. Wallace, S.P., V.F. Gutierrez, and X. Castenada. the Community Ethics Program. Journal of Cultural Health Service Disparities among Mexican Immigrants. Diversity. Winter 2003;10(4):118 – 123. Los Angeles: UCLA Center for Health Policy Research; 2005. 67. Desbiens, N.A., and A.W. Wu. Pain and suffering in seriously ill hospitalized patients. Journal of the 53. Carr, D.D. Implications for case management: American Geriatrics Society. May 2000;48(5 Suppl): ensuring access and delivery of quality health care to S183 – 186. undocumented immigrant populations. Lippincott’s Professional Case Management. July-August 68. Lynn, J., K.O. De Vries, H.R. Arkes, et al. 2006;11(4):195 – 204. Ineffectiveness of the SUPPORT intervention: review of explanations. Journal of the American Geriatrics 54. Lee, R., and V. Villa. Population Aging in California. Society. May 2000;48(5 Suppl):S206 – 213. Berkeley: California Policy Research Center; May 2001. 69. Bureau of National Affairs. California: Jury Decides Undertreatment of Pain Was Elder Abuse, Sets 55. Hirschman, C. Immigration and an Aging America: $1.5 Million Damages. 10 BNA Health Law Reporter. Downward Spiral or Virtuous Circle? In: Schaie, June 21 2001;982. K.W., and Uhlenberg, P., eds. Social Structures: The EFFECT of Demographic Changes on the Well-being 70. Charatan, F. New law requires doctors to learn care of Older Persons. New York: Springer Publishing of the dying. BMJ. 2001;323:1088. Company; Forthcoming. 71. Smedley, B.D., A.Y. Stith, and A.R. Nelson, eds. 56. Bustamante, A.V. Willingness to Pay for Cross-Border Unequal Treatment: Confronting Racial and Ethnic Health Insurance between United States and Mexico. Disparities in Healthcare. Washington, D.C.: National Berkeley, CA: California-Mexico Health Initiative: Academies Press; 2003. California Policy Research Center, University of California, Office of the President, 2006. 57. 72. Morrison, R.S., S. Wallenstein, D.K. Natale, R.S. California Office of Binational Border Health. Senzel, and L.L. Huang. “We don’t carry that”; — www.dhs.ca.gov/ps/dcdc/COBBH/. failure of pharmacies in predominantly nonwhite Accessed October 2006. neighborhoods to stock opioid analgesics. New England Journal of Medicine. 2000;342(14):1023 – 58. Clark, D. Palliative Care Service Provision: 1026. Reimbursement and Funding for Services in Mexico. www.eolc-observatory.net/global_analysis/mexico_ reimburse.htm. Accessed October, 2006. 48 | California HealthCare Foundation 73. Green, C.R., S.K. Ndao-Brumblay, B. West, and York: Open Society Institute Project on Death in T. Washington. Differences in prescription opioid America; 1999. analgesic availability: comparing minority and white pharmacies across Michigan. The Journal of Pain. 85. Kagawa-Singer, M., and S. Kassim-Lakha. A strategy October 2005;6(10):689 – 699. to reduce cross-cultural miscommunication and increase the likelihood of improving health outcomes. 74. Ibid. Academic Medicine. June 2003;78(6):577 – 587. 75. Law, A.V., M.P. Okamoto, and P.S. Chang. 86. Shrank, W.H., J.S. Kutner, T. Richardson, R.A. Prevalence and types of disease management Mularski, S. Fischer, and M. Kagawa-Singer. Focus programs in community pharmacies in California. group findings about the influence of culture on The Journal of Managed Care Pharmacy. July-August communication preferences in end-of-life care. 2005;11(6):505 – 512. Journal of General Internal Medicine. August 2005; 20(8):703 – 709. 76. McLean, W.M., and L.D. MacKeigan. When does pharmaceutical care EFFECT health outcomes? A 87. Murphy, S.T., J.M. Palmer, S. Azen, G. Frank, V. comparison of community pharmacy-based studies of Michel, and L.J. Blackhall. Ethnicity and advance pharmaceutical care for patients with asthma. Annals care directives. Journal of Law, Medicine and Ethics. of Pharmacotherapy. April 2005;39(4):625 – 631. 1996;24(2):108 – 117. 77. Briesacher, B., and R. Corey. Patient satisfaction 88. Hauser, J.M., S.F. Kleefield, T.A. Brennan, R.L. with pharmaceutical services at independent and Fischbach. Minority populations and advance chain pharmacies. American Journal of Health-System directives: insights from a focus group methodology. Pharmacy. March 1 1997;54(5):531 – 536. Cambridge Quarterly of Healthcare Ethics. Winter 1997;6(1):58 – 71. 78. Green, C.R., S.K. Ndao-Brumblay, B. West, and T. Washington. Differences in prescription opioid 89. Matthews, A.K., S.A. Sellergren, C. Manfredi, and analgesic availability: comparing minority and white M. Williams. Factors influencing medical infor- pharmacies across Michigan. The Journal of Pain. mation seeking among African American cancer October 2005;6(10):689 – 699. patients. Journal of Health Communication. May-June 2002;7(3):205 – 219. 79. Law, A.V., M.P. Okamoto, and P.S. Chang. Prevalence and types of disease management 90. Tulsky, J.A., B.R. Cassileth, and C.L. Bennett. The programs in community pharmacies in California. effect of ethnicity on ICU use and DNR orders in The Journal of Managed Care Pharmacy. July-August hospitalized AIDS patients. Journal of Clinical Ethics. 2005;11(6):505 – 512. Summer 1997;8(2):150 – 157. 80. McLean, W.M., and L.D. MacKeigan. When does 91. Wenger, N.S., D.E. Kanouse, R.L. Collins, et al. pharmaceutical care EFFECT health outcomes? A End-of- life discussions and preferences among comparison of community pharmacy-based studies of persons with HIV. JAMA. June 13 2001;285(22): pharmaceutical care for patients with asthma. Annals 2880 – 2887. of Pharmacotherapy. April 2005;39(4):625 – 631. 92. Cooper, D.E. Trust. Journal of Medical Ethics. June 81. Briesacher, B., and R. Corey. Patient satisfaction 1985;11(2):92 – 93. with pharmaceutical services at independent and chain pharmacies. American Journal of Health-System 93. Hall, M.A., E. Dugan, B. Zheng, and A.K. Mishra. Pharmacy. March 1 1997;54(5):531 – 536. Trust in physicians and medical institutions: what is it, can it be measured, and does it matter? Milbank 82. Doucette, W.R., J.M. Brooks, B.A. Sorofman, and Quarterly. 2001;79(4):613 – 639, v. H. Wong. Market factors and the availability of community pharmacies. Clinical Therapeutics. July 94. Pearson, S.D., and L.H. Raeke. Patients’ trust 1999;21(7):1267 – 1279; discussion 1266. in physicians: many theories, few measures, and little data. Journal of General Internal Medicine. 83. Office of Minority Health. National Standards for 2000;15(7):509 – 513. Culturally and Linguistically Appropriate Services in Health Care Final Report. Washington, DC; 2001. 95. Crawley, L., and B. Koenig. Dying in an African American Community: An Ethnographic Study. New 84. Crawley, L., and B. Koenig. Dying in an African York: Open Society Institute Project on Death in American Community: An Ethnographic Study. New America; 1999. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 49 96. Smedley, B.D., A.Y. Stith, and A.R. Nelson, eds. 108. Redfoot, D., and A. Houser. “We Shall Travel On:” Unequal Treatment: Confronting Racial and Ethnic Quality of Care, Economic Development, and the Disparities in Healthcare. Washington, D.C.: National International Migration of Long-Term Care Workers. Academies Press; 2003. AARP Public Policy Institute Report. October 2005. 97. Crawley, L., and B. Koenig. Dying in an African 109. Ibid. American Community: An Ethnographic Study. New York: Open Society Institute Project on Death in 110. Tache, S., and S. Chapman. Medical Assistants in America; 1999. California. California HealthCare Foundation/Center for the Health Professions Report. 2004. 98. Hirschman, C. Immigration and an Aging America: Downward Spiral or Virtuous Circle? In: Schaie, 111. Redfoot, D., and A. Houser. “We Shall Travel On:” K.W., and Uhlenberg, P., eds. Social Structures: The Quality of Care, Economic Development, and the EFFECT of Demographic Changes on the Well-being International Migration of Long-Term Care Workers. of Older Persons. New York: Springer Publishing AARP Public Policy Institute Report. October 2005. Company; Forthcoming. 112. Steinhauser, K.E., N.A. Christakis, E.C. Clipp, M. 99. Lee, R., and V. Villa. Population Aging in California. McNeilly, L. McIntyre, and J.A. Tulsky. Factors Berkeley: California Policy Research Center; May considered important at the end of life by patients, 2001. family, physicians, and other care providers. JAMA. November 15 2000;284(19):2476 – 2482. 100. Hirschman, C. Immigration and an Aging America: Downward Spiral or Virtuous Circle? In: Schaie, 113. Kemp, C. Cultural issues in palliative care. Seminars K.W., and Uhlenberg, P., eds. Social Structures: The in Oncology Nursing. February 2005;21(1):44 – 52. EFFECT of Demographic Changes on the Well-being 114. Bureau of Health Professions. Preliminary Findings: of Older Persons. New York: Springer Publishing 2004 National Sample Survey of Registered Nurses. Company; Forthcoming. Department of Health and Human Services, Health 101. Camarota, S.A. Immigration in an Aging Society: Resources and Services Administration; 2004. Workers, Birth Rates, and Social Security. 115. Redfoot, D., and A. Houser. “We Shall Travel On:” www.cis.org/articles/2005/back505.html. Quality of Care, Economic Development, and the Accessed October, 2006. International Migration of Long-Term Care Workers. 102. Trafford, A. Immigration is an Aging Issue. AARP Public Policy Institute Report. October 2005. Washington Post. April 18, 2006; Health sec. 116. McGrath, P., M. Vun, and L. McLeod. Needs 103. Bureau of Health Professions. Preliminary Findings: and experiences of non-English-speaking hospice 2004 National Sample Survey of Registered Nurses. patients and families in an English-speaking country. Department of Health and Human Services, Health American Journal of Hospice and Palliative Care. Resources and Services Administration; 2004. September-October 2001;18(5):305 – 312. 104. McElmurry, B.J., K. Solheim, R. Kishi, M.A. Coffia, 117. Dower, C. Bilingual Proficiency Among California’s W. Woith, and P. Janepanish. Ethical concerns in Health Care Professionals. California HealthCare nurse migration. Journal of Professional Nursing. Foundation/Center for the Health Professions July-August 2006;22(4):226 – 235. Report. 2005. 105. Bureau of Health Professions. Preliminary Findings: 118. Bola, T.V., K. Driggers, C. Dunlap, and M. Ebersole. 2004 National Sample Survey of Registered Nurses. Foreign-educated nurses: strangers in a strange land? Department of Health and Human Services, Health Nursing Management. July 2003;34(7):39 – 42. Resources and Services Administration; 2004. 119. McElmurry, B.J., K. Solheim, R. Kishi, M.A. Coffia, 106. Redfoot, D., and A. Houser. “We Shall Travel On:” W. Woith, and P. Janepanish. Ethical concerns in Quality of Care, Economic Development, and the nurse migration. Journal of Professional Nursing. International Migration of Long-Term Care Workers. July-August 2006;22(4):226 – 235. AARP Public Policy Institute Report. October 2005. 120. King, M. Care of Aging Americans Often in 107. Newman. Immigration Reform Could Result in Immigrants’ Hands. Seattle Times. June 20, 2006. Shortage of Elder Care Workers. Wall Street Journal. July 26, 2006. 50 | California HealthCare Foundation 121. Redfoot, D., and A. Houser. “We Shall Travel On:” Quality of Care, Economic Development, and the International Migration of Long-Term Care Workers. AARP Public Policy Institute Report. October 2005. 122. Kovner, C.T., M. Mezey, and C. Harrington. Who cares for older adults? Workforce implications of an aging society. Health Affairs. September-October 2002;21(5):78 – 89. 123. Redfoot, D., and A. Houser. “We Shall Travel On:” Quality of Care, Economic Development, and the International Migration of Long-Term Care Workers. AARP Public Policy Institute Report. October 2005. 124. King, M. Care of Aging Americans Often in Immigrants’ Hands. Seattle Times. June 20, 2006. 125. McElmurry, B.J., K. Solheim, R. Kishi, M.A. Coffia, W. Woith, and P. Janepanish. Ethical concerns in nurse migration. Journal of Professional Nursing. July-August 2006;22(4):226 – 235. 126. Dicicco-Bloom, B. The racial and gendered experi- ences of immigrant nurses from Kerala, India. Journal of Transcultural Nursing. January 2004;15(1):26 – 33. 127. McElmurry, B.J., K. Solheim, R. Kishi, M.A. Coffia, W. Woith, and P. Janepanish. Ethical concerns in nurse migration. Journal of Professional Nursing. July-August 2006;22(4):226 – 235. 128. Bola, T.V., K. Driggers, C. Dunlap, and M. Ebersole. Foreign-educated nurses: strangers in a strange land? Nursing Management. July 2003;34(7):39 – 42. 129. Redfoot, D., and A. Houser. “We Shall Travel On:” Quality of Care, Economic Development, and the International Migration of Long-Term Care Workers. AARP Public Policy Institute Report. October 2005. 130. Fong, T. Nurse Visa Crisis Eases. Modern Healthcare. June 13, 2005;35(24):28. 131. Newman. Immigration Reform Could Result in Shortage of Elder Care Workers. Wall Street Journal. July 26, 2006. 132. Redfoot, D., and A. Houser. “We Shall Travel On:” Quality of Care, Economic Development, and the International Migration of Long-Term Care Workers. AARP Public Policy Institute Report. October 2005. 133. King, M. Care of Aging Americans Often in Immigrants’ Hands. Seattle Times. June 20, 2006. 134. Ibid. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | 51