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Exploring end-of-life care experiences and disparities among Hispanic populations in the United States
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Exploring end-of-life care experiences and disparities among Hispanic populations in the United States
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Copyright 2023
EXPLORING END-OF-LIFE CARE EXPERIENCES AND DISPARITIES AMONG
HISPANIC POPULATIONS IN THE UNITED STATES
by
Valeria Lucia Cárdenas
A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(GERONTOLOGY)
December 2023
Copyright 2023 ii
DEDICATION
I dedicate this dissertation to my family, who have believed in me and shown up time and time
again to ensure I pursue my dreams. Without all of you, I wouldn’t be who I am today.
To my loving husband, Héctor, who has been the calm amidst the storm and my rock. Thank you
for providing for us and inspiring us to always strive for the best.
To my parents, Ramiro and Amelia, who made countless sacrifices to allow me to continue my
education and achieve my dreams. My mom, whose unconditional love and support gives me so
much strength. You nurtured every dream I had and did everything possible for me to be at every
practice, game, and event. To my dad, who has taught me the value of hard work and
perseverance, and encourage me to fight for what I want to achieve. You fought tirelessly to give
us a better life.
To my siblings, Ani, Ram, Gus, you were always there for me, listening to my ideas, providing
food, or simply offering your presence. I love growing up and experiencing life alongside you.
We are stronger together.
To my brothers-in-law, Dylan and Albi, I am grateful to have gained two brothers during my
PhD journey. You have treated me like a sister and wholeheartedly supported me.
To my parents-in-law, Alberto and Carmelita, I am thankful for embracing me as your own
daughter and showering me with affection and support.
Copyright 2023 iii
To my niece and nephew, Lucia and Nico, you both have been a source of immeasurable joy and
happiness in my life, especially during the most challenging times. I promise to always be there
for you, and support your dreams as you grow.
I am grateful for my friends, who have been my cheerleaders and listened to me discuss my
research and work time and time again. You inspire me with your own work and strength.
I am eternally grateful for my family and friends who have supported me through this whole
journey.
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ACKNOWLEDGEMENTS
To my faculty mentor and dissertation committee chair, Dr. Susan Enguídanos, I am profoundly
grateful for your unwavering support. You have always sought the best for me, providing
countless training opportunities, and challenging me to excel as a researcher, writer, and person.
Your guidance has truly shaped my experience at USC and taught me to focus on what truly
matters while remaining humble. I appreciate the trust and respect you have shown me
throughout our collaboration. I feel so lucky to have the opportunity to work under your
mentorship. I am thankful for your patience in reviewing my work time and time again.
To my dissertation committee members, Dr. Kathleen Wilber, Dr. Joseph Saenz, and Dr. Alexis
Coulourides Kogan, I am grateful for your mentorship, constructive feedback, and
encouragement throughout my dissertation. Your help came when I needed it most.
To Dr. Alexis Coulourides Kogan, your willingness to guide and mentor me throughout my PhD
journey and even before has been invaluable. You have been my role model, and taught me the
importance of prioritizing family and maintaining a healthy work-life balance.
To Dr. Anna Rahman, for taking the time early in my PhD journey to sit with me, mentor me,
share your passionate knowledge, and carefully review every sentence to help me improve my
English. Your passion is truly inspiring.
Copyright 2023 v
I would like to thank everyone in the Enguídanos Lab, past and present, including Dr. Deborah
Hoe, Meki Singleton, Olivia Wang, Fisher Zhu, Gillian Fennell for your feedback, for
collaborating with me and for closely reviewing my work.
I extend my gratitude to the healthcare providers and patients who participated in my studies,
generously volunteering their time. I would also like to thank the researchers, policy experts, and
palliative care healthcare providers who reviewed my proposals, protocols, and manuscripts as I
developed these studies, offering their valuable feedback and time.
You all made this possible.
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TABLE OF CONTENTS
DEDICATION.....................................................................................................................ii
ACKNOWLEDGEMENTS................................................................................................iv
LIST OF TABLES...........................................................................................................viii
LIST OF FIGURES............................................................................................................ix
ABSTRACT.......................................................................................................................xi
INTRODUCTION...............................................................................................................1
CHAPTER I: INTRODUCTION
Hispanics/Latinos.........................................................................................1
Hospice........................................................................................................1
Palliative Care..............................................................................................4
Advance Care Planning................................................................................6
End of Life Outcomes…………...................................................................7
Undocumented Immigrants..........................................................................9
Addressing Gaps in the Field......................................................................10
Conceptual Models ....................................................................................12
The Present Study.......................................................................................12
CHAPTER II: HISPANICS AND HOSPICE: A SYSTEMATIC LITERATURE
REVIEW
Introduction................................................................................................14
Methods......................................................................................................15
Results........................................................................................................17
Discussion..................................................................................................65
CHAPTER III: ADDRESSING BARRIERS TO HEALTHCARE FOR
UNDOCUMENTED IMMIGRANTS: PALLIATIVE CARE TEAM MEMBERS’
VIEWS
Introduction................................................................................................70
Methods......................................................................................................71
Results........................................................................................................73
Discussion..................................................................................................85
CHAPTER IV: ADVANCE CARE PLANNING AMONG HOSPITALIZED HISPANIC
PATIENTS: A PILOT STUDY OF THE ROLE OF ACCULTURATION AND
HEALTHCARE STEREOTYPE THREAT
Introduction................................................................................................89
Methods......................................................................................................91
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Results........................................................................................................93
Discussion..................................................................................................99
CHAPTER V: DISCUSSION..........................................................................................102
BIBLIOGRAPHY............................................................................................................109
APPENDICES.................................................................................................................143
Appendix A: Search Strategy...............................................................................143
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LIST OF TABLES
Table 1: Primary Aims of Included Studies.......................................................................19
Table 2: Results..................................................................................................................21
Table 3: Samples and Data Sources of Included Studies...................................................54
Table 4: Participant Characteristics...................................................................................75
Table 5: Themes Identified................................................................................................82
Table 6: Descriptive Characteristics for each Advance Care Planning Activity...............95
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LIST OF FIGURES
Figure 1: Consort Flow Chart............................................................................................18
Figure 2: Healthcare Stereotype Threat Score by Advance Care Planning Activity
Completion……………………………………………………………………………….97
Figure 3: Language Acculturation by Advance Care Planning Activity
Completion………………………………………………………………………………98
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ABSTRACT
The rapidly growing Hispanic population in the U.S., represents 19% of the population as
of 2021, and experiences significant healthcare disparities, particularly in access to hospice and
palliative care. This dissertation comprises three studies that aim to investigate and address these
disparities through a comprehensive analysis of hospice, palliative care, and advance care
planning.
This dissertation was guided by Andersen's behavioral model of health services use and
Yang and Hang's adaptation of Andersen's model. The first study systematically reviews 41 peer-
reviewed articles from Ovid Medline (PubMed), EMBASE, and CINAHL, assessing Hispanics'
knowledge and attitudes towards hospice, barriers and facilitators to hospice use, utilization
patterns, and hospice-related outcomes. The systematic literature review highlights lower hospice
knowledge and awareness among Hispanics and mixed results around hospice use and outcomes
in comparison to Whites.
The second study conducts semi-structured, individual telephone interviews with 11 team
members from two palliative care teams in two inner city hospitals in California. It investigates
the challenges and facilitators that palliative care team members face when caring for seriously
ill undocumented immigrants, as well as factors affecting access to care in this population.
Findings reveal that complications of postponing care, financial burden, fear of deportation,
transportation, health literacy, lack of family support, and misperceptions of palliative care
contribute to care-seeking behaviors and challenges. Provider care challenges include language
barriers, longer care processes, and cultural barriers.
The third study explores the relationship between healthcare stereotype threat, language
acculturation, and engagement in advance care planning activities among 50 Spanish-speaking,
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Hispanic patients with chronic life-limiting illnesses over the age of 40. Results indicate that
healthcare stereotype threat and acculturation significantly influence advance care planning
conversations and the development of advance directives.
The findings of these studies emphasize the influence of healthcare stereotype threat and
acculturation on advance care planning, underscore the need for interventions to address barriers
faced by undocumented immigrants, and demonstrate the relative lack of research focused
specifically on the Hispanic population's experiences with end-of-life care. Future research
should focus on testing interventions to overcome disparities and improve access to quality
hospice and palliative care for terminally ill Hispanics.
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CHAPTER 1: INTRODUCTION
Hispanics/Latinos
Hispanics or Latinos are defined by the United States Office of Management and Budget
as “a person who traces their origin or descent to Mexico, Puerto Rico, Cuba, Central and South
America, or other Spanish cultures or origin,” regardless of race. As of 2021, there were
approximately 62.6 million Hispanics in the U.S., representing 19% of its population, the
second-largest racial or ethnic group following non-Hispanic Whites (Lopez et al., 2022). As of
2021, people of Mexican origin represented nearly 60% of the nation’s Hispanic population
(Krogstad et al., 2022). By 2060, it is estimated that there will be 111.2 million Hispanics,
comprising 28% of the U.S. population (U.S. Census, 2018). In California, Hispanics represent
the largest racial or ethnic group, making up 39.4% of its population, with more than 15 million
Hispanics (U.S. Census Bureau, 2019). California has the largest Hispanic population in the
U.S., and the city with the highest share of Hispanics – Los Angeles (Pew Research Center,
2018). Forty-nine percent of Los Angeles’ population is Hispanic, with 4.8 million Hispanic
residents (U.S. Census, 2021). As this population continues to grow, so does the concern about
the healthcare disparities experienced by Hispanics.
Hospice
Hospice is a patient-centered approach to end-of-life care that provides pain and
symptom management, emotional, and spiritual support to people facing a terminal illness with
six or less months to live and their caregivers (NHPCO, 2020). Hospice is a well-utilized service
in the United States. Established in 1983, the Medicare Hospice Benefit covers pain and
symptom management and supportive services to those who are willing to forgo curative care.
Since its inception, hospice utilization has continued to rise (NHPCO, n.d.). In 2018, Medicare
Copyright 2023 2
hospice expenditures rose to $19.2 billion from $15.1 billion in 2014 (MedPAC, 2020). Hospice
services also can be paid for by Medicaid, most commercial insurances, and privately by patients
and families.
Hospice care has shown to lower health care cost by reducing emergency department
visits and intensive care unit stays (Kelly et al., 2013; Taylor et al., 2007), while also reducing
symptom distress and improving the quality of life of patients and their caregivers (Bradley et
al., 2004; Teno et al., 2007; Teno et al., 2012). In 2020, there were 1.72 million Medicare
hospice users and nearly half (47.7%) of Medicare patients that died where receiving hospice
services (NHPCO, 2022). This is a 6.8% increase in users from 2019, the largest increase in
number of American hospice users in the last four years (NHPCO, 2022).
However, Hispanics remain underrepresented in hospice. In 2018, Hispanics represented
just 6.7% of all U.S. Medicare hospice patients (NHPCO, 2020). In 2020, 33.3% of Hispanic
Medicare decedents used hospice, compared to 50.8% of Whites, 36.1% of Asian Americans,
35.5% of Blacks, and 33.5% of American Indian/Alaska Native (NHPCO, 2022). From 2019 to
2020, Hispanic beneficiaries showed the largest decrease in hospice use compared to other races,
with a 9.4 percentage point reduction in hospice use (NHPCO, 2022).
Researchers have suggested a wide variety of factors affecting hospice use among
Hispanics. Among these factors are language barriers (Arriaza et al., 2011), acculturation
(Loggers et al., 2013; Selsky et al., 2012;), lack of knowledge of hospice (Cagle et al., 2016;
Carrion et al., 2015; Colón, 2012; Pan et al., 2015), ‘familismo’ (Selsky et al., 2012), low levels
of education (Selsky et al., 2012), among many other challenges. Lee and Cagle (2016) found
that Hispanics hold less favorable opinions of hospice compared to non-Hispanic respondents.
This may be due to their lack of hospice knowledge and awareness (Bazargan et al., 2021; Cagle
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et al., 2016; Carrion et al., 2015; Colón, 2012; Duffy et al., 2006; Pan et al., 2015), and the
negative connotation around the Spanish word “hospicio” and their belief that it means
institutionalizing a loved one. However, after receiving hospice, twice as many Hispanic
Medicare patients as compared with White patients said it would have been easier if they had
received hospice sooner (Adams et al., 2007). Despite their lack of knowledge or awareness of
hospice, Hispanics have shown preference for hospice (Colón, 2012).
Yet, Hispanics are less likely to enroll in hospice and have lower rates of enrollment
compared to Whites (Elting et al., 2020; Forst et al., 2017; Givens et al., 2010; Haas et al., 2007;
Haines et al., 2018; Lin et al., 2022; Mehanna et al., 2020; Park et al., 2016; Sammon et al.,
2015; Taylor et al., 2017; Wan et al., 2022). Price and colleagues (2017) found that Hispanics are
more likely to receive care from for-profit hospices and from hospices that provide significantly
poorer care compared to their counterparts. Being Hispanic also has been associated with higher
odds of live discharge, elevated risk of hospitalization (Frahm et al., 2015; Luth et al., 2020;
Russell et al., 2017, and Russell et al., 2019), and shorter hospice stays (Lin et al., 2022). In
addition, palliative care clinicians also are more likely to overestimate survival in Latino patients
with advanced cancer compared to Whites. This overestimation is associated with lower hospice
use (Gramling et al., 2019). However, when Fischer and colleagues’ (2015) study provided home
visits from a culturally tailored patient navigator to Hispanic patients, they tended to have greater
lengths of stay in hospice. Hospice care can fulfill the unique needs of terminally ill patients,
however other models of care, such as palliative care, are necessarily for those who are
experiencing a range of symptoms from their illness, but who are not in their last six months of
life and are still undergoing curative treatment.
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Palliative Care
Palliative care is defined as “specialized medical care for people with serious illness. It is
focused on providing relief from the symptoms and stress of the illness” (Get Palliative Care,
2021). There are currently several models of specialized palliative care based on the setting
where care is provided: hospital-based palliative care, home-based palliative care, outpatient
palliative care, nursing home palliative care, and more recently, a web-based delivery. Palliative
care has been shown to decrease patient symptom burden, improve the quality of life of patients
and their caregivers, and reduce hospitalization (Anagnostou, 2017; Brumley et al., 2007;
Dhiliwal & Muchaden, 2015; Gade et al., 2008; Gomes et al., 2013). However, existing research
regarding Hispanics and palliative care outcomes is even more limited than hospice research.
Palliative care research on racial disparities primarily has focused on differences between Whites
and African Americans, and to a lesser extent on Hispanics (Johnson, 2013). Yet, the small
number of extant studies have demonstrated favorable outcomes among minorities receiving
palliative care, including higher rates of advance directive completion (Zaide et al., 2013),
greater rates of hospice referrals (Ciemins et al., 2006), increased satisfaction with healthcare
(Holley et al., 2009), and pain reduction (Laguna et al., 2014). Although a study examining pain
following inpatient palliative care consultations did report that all Latinos experienced less pain
after the consultations, Hispanics had higher levels of pain at hospital discharge than Whites
(Laguna et al., 2014).
More recently, several studies have examined palliative care utilization among Hispanics
and Whites. Thirteen studies found that Hispanics were less likely to receive palliative care
consultations or found lower use of palliative care among Hispanics as compared to Whites,
while just one study demonstrated higher use. Hispanic dialysis patients (Chong et al., 2017),
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patients who died within six months of hospitalization (Nguyen et al., 2021), sickle cell disease
patients (Nwogu-Onyemkpa et al., 2022), nursing home residents (Estrada et al., 2022), patients
with severe traumatic brain injury (Williamson et al., 2022), advanced non-small cell lung cancer
patients (Islam et al., 2022), metastatic foregut cancer patients (Ju et al., 2021), metastatic
hepatocellular carcinoma patients (Alterio et al., 2021), multiple myeloma patients (Al Hadidi et
al., 2021), mechanically ventilated patients (Ali et al., 2022), intracerebral hemorrhage patients
(Suolang et al., 2022), gastric cancer patients (Joo et al., 2022), and ovarian and cervical cancer
patients (Islam et al., 2021) all were less likely to receive palliative care services or had lower
odds of palliative care use compared to Whites. Only one study of hospitalized patients with
metastatic gastrointestinal malignancies found that Hispanics had higher inpatient palliative care
utilization than Whites; despite this finding, there was no difference in length of hospital stay
among Whites and Hispanics. (Okafor et al., 2017). However, a study of Medicare beneficiaries
found that Hispanics had a shortest length of stay in acute palliative care compared to Whites,
African Americans, Asians, and other (Mendieta & Miller, 2018).
Similar to hospice barriers, a few studies have identified communication barriers, cultural
barriers, health literacy, and socioeconomic disadvantages as potential barriers to palliative care
(Cervantes et al., 2017; Gaudio et al., 2013; Smith et al., 2009). In a survey of Californian adults,
75% of Hispanics had never heard of palliative care compared to 49% of non-Hispanic Whites
(Bazargan et al., 2021). Findings from the 2018 Health Information National Trends Survey
showed that Hispanics had significantly lower awareness of palliative care (Langan et al., 2021;
Zhu & Enguidanos, 2019).
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Advance Care Planning
Advance care planning (ACP) is the process that helps adults at any age or stage of health
understand and prepare for future medical care in the event that they are not able to make their
own decisions ACP often consist of three components: having ACP conversations with a
healthcare provider, having an advance directive (a written document with a person’s wishes
regarding medical treatment if they are no longer able to make decisions themselves) and having
a durable power attorney for health care. In 1991, the Patient Self-Determination Act was passed
mandating that healthcare providers, including hospitals, skilled nursing facilities, hospices,
home health organizations, and HMOs provide information about advance directives to patients
(Teoli & Ghassemzadeh, 2019). This act requires that patients are informed about their rights to
be involved in the medical decision-making process, that they are asked about advance
directives, and that their wishes are documented without any discrimination. However, no law
was in place to reimburse healthcare providers for such conversations during routine physical
exams with older adults until the Affordable Care Act initially developed reimbursements to
physicians for optional ACP conversations. The bill was later removed due to the controversy
stating that these conversations were “death panels.” It was not until January of 2016, following
initiation of a bipartisan bill, that the Centers for Medicare and Medicaid Services began
reimbursing for ACP conversations. Physicians and eligible healthcare providers are reimbursed
$86/$80 for the first 30 minutes and $75 for an additional 30 minutes. During these sessions,
patients are not required to complete an advance directive.
Hispanics have lower rates of advance directives (Huang et al., 2016; Rao et al., 2014;
Silveira et al., 2014; Smith et al., 2008) and living wills (Choi et al., 2018; Orlovic et al., 2019)
and are less likely to discuss end-of-life care wishes (Harrision et al., 2016; Orlovic et al., 2019;
Copyright 2023 7
Peterson et al., 2019). They also are less likely to discuss their end-of-life preferences with
family (Peterson et al., 2019). However, they are more likely to discuss them with their family
members than they are with their doctors (Johnson et al., 2019); especially those who report
having a greater family involvement (Peterson et al., 2019). End-of-life conversations among
White patients typically result in less aggressive interventions, however this is not the case for
Hispanics (Mack et al., 2010).
Engagement in ACP has led to higher patient and family satisfaction and can more likely
lead to end-of-life wishes being followed (Detering et al., 2010), including patient’s preferred
place of death (Burghout et al., 2022), less in-hospital death and increased hospice use (Bischoff
et al., 2013). Similarly, to hospice and palliative care, research around ACP and Hispanics is
sparse. Yet research has shown that Hispanics are less likely to engage in ACP (Carr, 2011; Carr,
2012; Harrision et al., 2016; Smith et al., 2008; Wittenberg-Lyles et al., 2008) and less likely to
have heard of ACP (Perkins et al., 2002), compared to Whites.
End of Life Outcomes
Beyond access to hospice and palliative care, Hispanics report worse end-of-life care
outcomes than non-Hispanic Whites. Hispanics are more likely to receive aggressive life-
sustaining treatment in the last six months of life compared to Whites (Blackhall et al., 1999;
Hanchate et al., 2009; Ko et al., 2012). In the last month of life, as compared to Whites,
Hispanics are more likely to use intensive care, with an increased use of life support, kidney
dialysis (Orlovic et al., 2019), and artificial nutrition (Rahman et al., 2016; Kuo et al., 2010;).
Among dementia patients, a larger proportion of Hispanics had written instructions selecting all
care possible to prolong life, while a larger proportion of Whites had selected to either limit care
in certain situations, withhold treatments, or forgo aggressive life-prolonging treatments (Lin et
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al., 2022). Hispanic patients with advanced cancer are less likely to have a do-not-resuscitate
order than Whites (Garrido et al., 2014).
Gozalo and colleagues (2011) found that Hispanics also are more likely to experience
burdensome healthcare transitions in the last 90 days of life. Two national studies of nursing
home patients have found that Hispanics are significantly more likely to be hospitalized in the
last 90 days of life compared to Whites (Frahm et al., 2012; Frahm et al., 2015). In the last 180
days of life, a higher proportion of Hispanic dementia patients had emergency department visits,
hospitalizations, and longer hospital stays (Lin et al., 2022). Consequentially, Hispanics are more
likely than Whites to die in a hospital setting (Gruneir et al., 2007; Flory et al., 2004; Lackan et
al., 2009), while they are less likely to die at home, in a nursing home, in hospice, and in an
outpatient medical facility (Bajaj et al., 2023; Orlovic et al., 2019). Although some Americans
may choose to die in a hospital, a study of terminally ill cancer patients revealed that 90% of
patients prefer to die at home (Tang, 2003). In a study of community-dwelling Medicare
beneficiaries aged 65 or older, 15.2% of Hispanics stated they prefer to die in a hospital,
compared to 8% of Whites (Barnato et al., 2009).
Hispanic decedents tend to have higher end-of-life expenditures (Karanth et al., 2019),
perhaps due to their greater likelihood of being admitted to the intensive care unit (Hanchate et
al., 2009; Chen et al., 2020), and receiving intensive procedures (Hanchate et al., 2009). Being
Hispanic has been significantly associated with a larger increase of Medicare healthcare costs in
the last six months of life and in the last 30 days of life compared to White patients (Taylor et al.,
2019). Hispanics’ lack of knowledge and lack of conversations around advance directives
(Fischer et al., 2012) may contribute to these end-of-life outcomes. Thus, the care received and
the care preferred may not be concordant.
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Undocumented Immigrants
California is home to the highest share of undocumented immigrants with about 2.3
million, representing more than 6% of the state’s population (Hayes & Hill, 2017). Across the
U.S., the undocumented immigrant population ranges from 10.5 million to 12 million and makes
up about 3.2% to 3.6% of the population (Kamarck & Stenglein, 2019). Over 80% of these
undocumented immigrants are Hispanic (Wallace et al., 2012).
Undocumented immigrants face numerous barriers to obtaining healthcare services,
largely due to fear of deportation and limited access to healthcare (Wallace et al., 2012). About
71% of undocumented immigrants are uninsured and are excluded from enrolling in health
insurance provided under the Patient Protection and Affordable Care Act (ACA; Capps et al.,
2013). Undocumented immigrants are less likely to use the emergency department in comparison
to their documented counterparts (Wallace et al., 2013). In a California study, of the 34.7% of
undocumented immigrants who used the emergency department as their primary source of care,
only 17.9% received ambulatory care (Wallace et al., 2013).
This lack of access to medical care and delayed care for illness has led to greater
symptom burden among undocumented immigrants, who often present themselves at emergency
rooms with advanced disease stage, making it more challenging to plan their care (Metchnikoff
et al., 2018). These immigrants are often stabilized in the emergency department, discharged, and
soon return to the emergency room again for unmanaged symptoms. Programs for seriously ill
patients, such as palliative care and hospice services, lessen patients’ symptoms and improve
their quality of life (Dhiliwal & Muchaden, 2015; Meier, 2011). However, a nationwide survey
found that 32% of US hospice agencies limit or do not enroll undocumented patients (Gray et al.,
2017). Their lack of eligibility for hospice services or palliative care limits them to care in
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outpatient clinics or emergency rooms, contributing to poor end-of-life care outcomes. Overall,
this group is at greater risk of dying from untreated and undiagnosed chronic diseases (Jaramillo
& Hui, 2016; Metchnikoff et al., 2018) such as cancer and heart failure, the top two leading
causes of death among Hispanics (CDC, 2015).
Research around healthcare providers’ perspectives on undocumented immigrant’s end-
of-life care experiences is nearly nonexistent. A few published commentaries have shown the
difficult situations undocumented Hispanic immigrants may face when approaching end-of-life,
from the perspective of healthcare providers. In one case, a male patient made the decision to
transition to hospice, however staff was unable to secure hospice services given his uninsured
status, and later he was accepted as a charity hospice patient. He was prescribed morphine tablets
but was unable to pay for the prescription cost until a family member stepped in and paid for the
medication. He passed away at home, a month after enrolling in hospice (Jaramillo & Hui,
2016). In another case, a female patient had been experiencing 4 months of intractable pain and
was diagnosed with metastatic cancer. She had been diagnosed with cervical cancer two years
prior, but never went back for treatment after her first chemotherapy due to lack of insurance.
There was no Spanish speaking provider at the hospital, and the healthcare team had to contact
her daughter in Mexico to discuss treatment options. After discussing risk and benefits of
palliative chemotherapy, the daughter made the decision to have her mother sent home to
Mexico (Karapetyan et al., 2018). These case reports highlight the challenges seriously ill
undocumented immigrants experience while navigating end of life care.
Addressing Gaps in the Field
After a thorough review of the literature, we found that there is little research on the
experiences of seriously ill Hispanics, particularly involving hospice care, palliative care,
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undocumented immigrants, and advance care planning. Despite the limited research, end-of-life
care disparities are evident among Hispanics.
First, hospice care among Hispanics literature has been previously synthesized in five
recent literature reviews. However, two systematic literature reviews only evaluated hospice
utilization, one focusing on all minority groups (Cohen, 2008) and the other solely on Hispanics
(Rising et al., 2019). Two other systematic literature reviews focused broadly on end-of-life care
for cancer (LoPresti et al., 2016) and dementia patients (Connolly et al., 2012) among ethnic
minority groups. Lastly, Colón (2005) conducted a literature review of hospice and Hispanics,
however, it did not adhere to established systematic review methods. There is a need for a
systematic literature review that summarizes the extant research on Hispanics’ experiences with
all aspects of hospice care and identifies gaps in this research.
Second, while there is a growing body of research on undocumented immigrants, few
publications have focused on seriously ill patients and end-of-life care. The few studies that do
exist focused largely on end stage renal disease, and are limited to health care provider’s case
studies. Therefore, more research is necessary to explore how seriously ill undocumented
Hispanic patients and healthcare providers providing care to this population navigate end-of-life
care.
Third, ACP has been limited to examining utilization among Hispanics and Whites, yet
research should focus on the factors causing lower utilization among Hispanics compared to
Whites. Prior work has been conducted examining acculturation impact on advance care
planning, yet no study has explored how healthcare stereotype threat, the psychological
experience of confronting stereotypes in the healthcare system, can impact ACP.
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Conceptual Models
This dissertation guided by two conceptual/theoretical frameworks: Andersen’s
behavioral model of health services use (Andersen, 1968; Andersen, 1995), and Yang and
Hwang’s (2016) adaptation of Andersen’s model that specifically addresses immigrant health
service utilization. Andersen’s model explains individual use of health services as a function of
three major components: 1) an individual’s predisposing characteristics; 2) enabling resources
that facilitate use; 3) individual’s perceived need for care. Predisposing characteristics refer to
demographic information, social structure, and health beliefs such as: age, gender, education,
social interactions, social networks, culture, values, beliefs, and attitudes. Family and community
enabling resources refer to factors that facilitate healthcare use such as: income, health insurance,
availability of health services in the community, and having a usual source of care. Perceived
need refers to the individual’s own assessment of the importance to seek help from a healthcare
provider; factors include health status, number of chronic conditions, and self-reported health
status. Andersen’s health behavior model of health services use has been previously used in
studies of immigrants (Akresh, 2009; Choi, 2009; Kao, 2019; Leclere et al., 1994; Vargas
Bustamente et al., 2012). Yang and Hwang’s (2016) adaptation of this model retains Andersen’s
main ideas but takes into account factors that are specific to immigrants. These factors include
disease prevalence and health environment in the country of origin, their immigration status,
homeland-based financial and social resources, and immigrant ethnic culture.
The Present Study
The present dissertation research seeks to address some of these under-studied areas of
Hispanic research. Chapter II provides a comprehensive review of the hospice experience among
Hispanics living in the United States by synthesizing the known findings on hospice knowledge
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and awareness, attitudes towards hospice, barriers to and facilitators of hospice use, and
outcomes of hospice care. Chapter III provides insight into the challenges and facilitators
palliative care team members encounter in caring for seriously ill undocumented immigrants and
the factors affecting access to care in this population. Chapter IV explores the relationship
between ACP activities and healthcare stereotype threat, as well as the relationship between ACP
activities and language acculturation among hospitalized Spanish-speaking, Hispanic patients.
Chapter V discusses the importance of the research, implications for future research, adding to
knowledge, moving research forward, and remaining gaps.
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CHAPTER II: HISPANICS AND HOSPICE: A SYSTEMATIC LITERATURE REVIEW
Introduction
Hospice is a patient-centered approach that provides pain and symptom management, as
well as emotional and spiritual support to terminally ill patients with six or less months to live
and their caregivers (NHPCO, 2020).
Hospice has been shown to improve overall patient and
family satisfaction with care (Teno et al., 2004),
reduce hospitalizations and hospital costs
(Sammon et al., 2015),
result in fewer unmet needs (Teno et al., 2011),
and reduce pain and
symptoms (Waldrop et al., 2016).
Nearly half of Americans die under the care of hospice
(NHPCO, 2020).
U.S. hospice utilization and the number of hospice programs continue to rise
(Bhatnagar & Lagnese, 2021),
yet Hispanics remain underrepresented among hospice patients. In
2019, Hispanics represented just 9% of all Medicare hospice patients (KFF, n.d.),
although
18.5% of the U.S. population identifies as Hispanic (U.S. Census Bureau, n.d.).
This under-utilization of hospice services is indicative of misconceptions and lack of
awareness of hospice among the Hispanic community (Cagle et al., 2016).
Although the rate of
Hispanics who use hospice has been gradually increasing (AARP, 2019),
studies continue to
demonstrate that Hispanics are less likely to use hospice than non-Hispanic Whites (Cohen,
2007; Givens et al., 2010; Haines et al., 2018; Sammon et al., 2015).
Use of hospice care among
Hispanics has been previously evaluated in five literature reviews (Cohen, 2007; Colon, 2005;
Connolly et al., 2012; LoPresti et al., 2016; Rising et al., 2019).
However, extant work lacks a
collated understanding of Hispanics’ experience with hospice from pre- enrollment to death. To
address this research gap, we conducted a comprehensive systematic literature review on the
hospice experience among Hispanics living in the United States. In addition to describing rates
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of hospice use, we offer a narrative analysis of known findings on hospice knowledge and
awareness, attitudes towards hospice, barriers to and facilitators of hospice use, and outcomes of
hospice care among Hispanics. We also assess the quality of and gaps in this research.
Methods
Hispanics
Hispanics (or Latinos) are defined by the U.S. Office of Management and Budget as “a person
who traces their origin or descent to Mexico, Puerto Rico, Cuba, Central and South America, or
another Spanish-speaking culture” (U.S. Census Bureau, 2021).
For this manuscript, we chose to
use the term “Hispanics” to describe this population. However, in our results section, we
maintained the original identifying terms as reported in the cited studies.
Study Design
We systematically reviewed the published literature pertaining to Hispanics’ experiences of
hospice. We searched Ovid Medline (PubMed), EMBASE, and CINAHL through March 2020
using search terms for hospice care, end-of-life care, Hispanics and Latinos. Detailed search
terms are outlined in Appendix A. An initial search using a complete Boolean search strategy
was conducted by a librarian specialist in March of 2019, and the final search was conducted by
V.C., in March 2020. Our review is registered at PROSPERO under the title “Hospice Care for
Hispanics: A Systematic Literature Review” (CRD42020172455).
Article Selection
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We included quantitative studies that investigated Hispanics’ (1) hospice knowledge; (2)
attitudes toward hospice; (3) facilitators and barriers to hospice use; (4) rates of hospice use; and
(5) hospice outcomes of care. We excluded non-empirical work, such as commentaries, case
studies, editorials, and literature reviews. We also excluded empirical studies that discussed
populations outside of the U.S., were qualitative, focused solely on health care professionals,
grouped Hispanics with other ethnicities, and addressed pediatric populations. The search
yielded 31 conference abstracts; V.C. contacted the authors of these abstracts to obtain full-text
manuscripts. If a manuscript was not available, conference abstracts were excluded.
Two reviewers (V.C. and G.F.) independently reviewed the titles and abstracts of all retrieved
articles using Covidence systematic review software (Covidence, 2020).
The two reviewers then
met with a third reviewer (S.E.) to reconcile all discrepancies until 100% consensus was reached.
Abstracts that met inclusion criteria were selected for independent full-text review by the same 2
reviewers (V.C. and G.F.). During this stage, studies published prior to 2005 and studies
published since 2005 using only data collected prior to 2000 were excluded to ensure we
captured a current understanding of Hispanics’ hospice experiences.
Data Extraction
The following data were extracted: title, first author, year of publication, study aim, year of data
collection, type of study, location/setting, population, sample size, Hispanic sample size, and
main findings related to Hispanics and hospice. Included articles were then categorized into the
five main foci of this review: Hispanics’ (1) hospice knowledge; (2) attitudes toward hospice; (3)
facilitators and barriers to hospice use; (4) hospice utilization, and (5) hospice-related outcomes.
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Assessment of Study Quality
Quality of the studies was assessed using Hawkers’ quality indicators (Hawker et al., 2022).
Each of nine areas (title and abstract; introduction and aims; method and data; sampling; data
analysis; ethics and bias; results; transferability or generalizability; implications and usefulness)
was scored on a four-point scale: (1) very poor, (2) poor, (3) fair, (4) good. The summed scores
of each article had a possible range of 9 (very poor) to 36 (good). Studies that accumulated 18 or
fewer points were excluded. Two reviewers (V.C. and G.F.) independently assessed each study’s
methodological quality. In the event of a disagreement, V.C. conferred with S.E. to reach
consensus.
Results
Figure 1 presents the CONSORT flow diagram. The initial search yielded 4,841 articles.
Following removal of duplicate abstracts, we identified 4,804 articles, which were narrowed to
115 after title and abstract screening. Forty-two articles met the inclusion criteria at the full-text
review stage; 41 were quantitative studies and one was a mix methods study. After quality
assessment, we excluded one study from this review due to its insufficient statistical power.
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Figure 1: Consort Flow Chart
Several of the included studies addressed more than one of the five study foci of this review.
These foci frame the results section following the typical progression of hospice engagement.
Sections appear in the following order with specific attention to Hispanic sub-samples and
comparisons (See Table 1):
(1) Knowledge of Hospice and Predictors of Knowledge (n = 8);
(2) Attitudes towards Hospice (n = 6);
(3) Facilitators and Barriers to Hospice Enrollment and Predictors of Hospice Use (n = 4);
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(4) Hospice Utilization (n = 21); and
(5) Hospice Outcomes (n = 5).
Table 1: Primary Aims of Included Studies
Author
Knowledge of
hospice, the
source of
information, and
predictors of
knowledge
Attitudes
towards
hospice
Facilitators
or barriers
to hospice
enrollment
Hospice
utilization
Hospice
outcomes
Adams et al. 2006
X
Adams et al. 2007 X X
Adams et al. 2008 X
Beltran 2018
X
Cagle et al. 2016
X
Carrion et al. 2015 X
Cea et al. 2016 X
Colón 2012
X X
Colón & Lyke
2015
X X
Fischer et al. 2018
X X
Fosler et al. 2015 X
Frahm et al. 2012 X
Frahm et al. 2015
X
Givens et al. 2010
X X
Haas et al. 2007 X
Hachate et al. 2009 X
Haines et al. 2018
X
Hardy et al. 2011
X
Hardy et al. 2012 X
Johnson et al. 2020 X X
Kirkendall et al.
2015
X
Ko et al. 2017
X X X X
Lee & Cagle 2017
X X
Loggers et al. 2013
X X
Luth et al. 2020 X
Pan et al. 2015
X X
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Park et al. 2012 X
Park et al. 2016
X X
Price et al. 2017
X X
Russell et al. 2017 X
Russell et al. 2019 X
Russell et al. 2020
X
Sammon et al. 2015
X
Selsky et al. 2012 X X X
Sharma et al. 2015 X
Smith et al. 2009
X X
Taylor et al. 2017
X X
Taylor et al. 2019 X
Wang et al. 2019 X X
Wilkie et al. 2017
X
Wilson et al. 2018
X
Worster et al. 2018 X
Table 2 provides details on study aims, design, data collection year(s), location(s), population
and setting, sample size, Hispanic sample size, key findings, and quality assessment score. The
included studies used a variety of methods ranging from retrospective chart reviews, to
prospective cohort, mixed methods, and a randomized controlled trial (RCT). Data used for
included studies were collected between 1991 and 2017. Twelve studies utilized national
samples, three were based in 9 to 13 U.S. states, six were conducted in Texas, 5 in New York,
three in Florida, three in Illinois, three in specific U.S. regions, two in New Jersey, two in
Colorado, and one each in California, Washington, D.C, and Pennsylvania. The studies’ quality
scores ranged from 26 to 36 (M = 32.6), out of a possible score of 36. The most common quality
indicators in which studies scored below good (4 points) were ‘data analysis’ and ‘ethics and
bias.
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Of all 41 included articles, 25 used original data and 12 used national datasets. Twenty-seven
studies compared Hispanics to other racial/ethnic groups, five focused exclusively on Hispanics,
two compared Hispanic nationalities, and no study examined Hispanic undocumented
immigrants. See Table 3.
Table 3: Samples and Data Sources of Included Studies
Author
Hispanic
Only
Sample
Comparison
among
Hispanic
Nationalities
Compared
with Other
Ethnic/Racial
Groups
National
Datasets
Use
Similar
Datasets
Adams et al. 2006 X
Adams et al. 2007
X
Adams et al. 2008
Beltran 2018 X X
Cagle et al. 2016 X
X
X
Carrion et al. 2015 X
X
X
Cea et al. 2016
X
X
Colón 2012 X X
Colón & Lyke 2015 X
Fischer et al. 2018 X
Fosler et al. 2015 X
Frahm et al. 2012
X
X
Frahm et al. 2015 X X X
Givens et al. 2010 X X
Haas et al. 2007 X
X
Hachate et al. 2009 X
X
Haines et al. 2018 X X
Hardy et al. 2011 X
Hardy et al. 2012
X
Johnson et al. 2020 X
Kirkendall et al. 2015 X
Ko et al. 2017 X
Lee & Cagle et al.
2017 X
Loggers et al. 2013
Luth et al. 2020 X
X
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Pan et al. 2015 X
Park et al. 2012 X
Park et al. 2016 X
Price et al. 2017 X X
Russell et al. 2017 X X
Russell et al. 2019 X
X
Russell et al. 2020 X
X
Sammon et al. 2015 X X
Selsky et al. 2012 X
Sharma et al. 2015 X
Smith et al. 2009 X
X
Taylor et al. 2017 X X
Taylor et al. 2019 X X
Wang et al. 2019 X
X
Wilkie et al. 2017 X
Wilson et al. 2018 X
Worster et al. 2018 X
Knowledge of Hospice and Predictors of Knowledge
Eight studies examined various aspects of hospice knowledge.
Awareness of Hospice. Seven studies reported on participants’ awareness of hospice (i.e.,
whether participant has heard of or is aware of hospice), ranging from 16% of Spanish-speaking
Hispanics (Pan et al., 2015)
to 43% of Latinos at a cultural event (Colón, 2012)
to 73% of
American Association of Retired Persons (AARP) Hispanic members having heard of hospice
(Lee & Cagle, 2017).
Using a nationally representative sample, Cagle et al., (2016)
and Carrion
et al., (2015)
reported that 56% of Hispanics had heard of hospice. Pan and colleagues (2015)
reported a smaller proportion of Hispanics (8%) who knew of family or friends who had enrolled
in hospice, compared to Chinese (16%) and Korean (10%) respondents. While these previous
studies reported awareness in non- hospice eligible populations or caregivers, Ko et al., (2017)
studied hospice knowledge among family caregivers from a home healthcare agency; only 23.3%
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of Hispanics were familiar with hospice. Selsky et al., (2012)
reported that 29% of non-
terminally ill Latino patients from safety-net clinics had heard of hospice.
Hospice Knowledge. Three studies assessed hospice knowledge measured through 3 different
knowledge scales (i.e., yes-or-test; Carrion et al. 2015; Colón, 2012; Selsky et al., 2012).
Carrion
et al., (2015) found no significant difference between Hispanics and non-Hispanics. Another
study compared knowledge scores among Puerto Ricans, Dominicans, Central Americans, South
Americans, and other Latinos; however, no significant differences were found in knowledge
level (Colón, 2012).
Selsky et al. (2012)
reported a low mean hospice knowledge score of 3.1 (on
a scale of 0 to 7) among a community sample of immigrant Latinos from Central and South
America.
Three studies analyzed knowledge of hospice facts among Hispanics. Carrion et al., (2015)
found
none of the Hispanic respondents from a national sample (contrasted with 41% of non-
Hispanics) were aware that patients do not receive curative treatment along with hospice care.
Within the same manuscript, 67% of Hispanics were aware that hospice helps caregivers and
loved ones (97% for non-Hispanics) and 56% thought only adults aged 65 and older could
receive hospice services (7% for non-Hispanics; Carrion et al., 2015). Furthermore, 89% of
Hispanics believed that hospice services end after the patient dies, compared to 55% of Whites
(Carrion et al., 2015). A different study of a Latino-only sample found that 45% of respondents
knew that hospice served terminally ill patients and their families, 15% thought hospice could
only be provided in nursing homes (Colón, 2012).
Another study of Medicare hospice decedents
found no significant difference in the proportions of Hispanics (43.4%) and Whites (35%) who
knew that Medicare would pay for their hospice services (Adams et al., 2007).
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Predictors of Hospice Knowledge. Only one study examined predictors of hospice knowledge
among Latinos. Selsky et al. (2012)
concluded that higher education, social acculturation, contact
with social organizations, and subscribing to Latino cultural values were associated with higher
hospice knowledge, while language acculturation was not.
Sources of Hospice Knowledge. One study assessed the source from which Hispanics received
hospice information. Adams and colleagues (2007)
found that 75% of Hispanic Medicare
hospice patients first heard of hospice from their physician, compared to 60% of Whites.
However, 78.7% of Whites reported being “very comfortable” discussing hospice with their
physician, compared to 59.6% of Hispanics (Adams et al., 2007).
Attitudes Towards Hospice
Six studies explored Hispanics’ attitudes toward hospice. Lee and Cagle (2017)
found that
AARP Hispanic respondents held less favorable opinions of hospice compared to non-
Hispanics. Colón (2012)
found no significant differences in attitudes towards hospice among
Puerto Ricans, Dominicans, Central Americans, South Americans, and other Latinos. In a study
of family caregivers of Latino patients, more than half (59.3%) agreed that hospice was ‘offered
when nothing else can be done,’ but most (76.7%) disagreed that ‘hospice means giving up on
life’ (Ko et al., 2017).
When given a hypothetical scenario of advising a terminally ill patient,
53.7% of Latino respondents recommended hospice services at home and 11.1% advised the use
of hospice services in a facility (Colón, 2012). A similar study found that 35% of Latino
respondents advised a hypothetical terminally ill patient to use hospice (Selsky et al., 2012).
Colón (2012)
found that 28.9% agreed they would not need hospice because God would take
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care of them; 38% agreed that they would prefer a folk healer or ‘curandero’ rather than hospice;
and 70.6% agreed they would want everything done to stay alive.
Adams et al. (2007),
Pan et al. (2015),
and Colón (2012)
published a patchwork of findings on
attitudes towards hospice. Among Medicare hospice patients, nearly twice as many (41.4%)
Hispanic respondents said it would have been easier if they had received hospice sooner relative
to Whites (21.7%; Adams et al., 2007).
Pan et al. (2015)
reported that Hispanics (95%) and
Chinese (94%) were more likely than Korean (74%) community members to want information
about hospice. However, Hispanics (75%) were significantly less likely to share hospice
information with loved ones compared to Chinese (94%) and Korean (87%) respondents (Pan et
al., 2015).
Colón (2012)
concluded that level of language acculturation had almost no correlation
with hospice attitudes, while education and household income were predictive of positive
hospice attitudes.
Facilitators and Barriers to Hospice Enrollment and Predictors of Hospice Use
Four studies discussed factors that impact willingness to enroll in hospice. First, English
proficiency increased caregivers of Latino patients’ (Ko et al., 2017)
and non-Cuban Hispanic
older Floridians’ (Park et al., 2016) willingness to use hospice. Two studies found acculturation
to be positively predictive edge (Selsky et al., 2012)
and enrollment (Loggers et al., 2013).
Among caregivers, belief that enrollment in hospice did not mean giving up on life and trust in
the physician’s decision-making increased willingness to use hospice (Ko et al., 2017).
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Factors associated with non-hospice enrollment among Latinos included familism, family
caregiving, the belief that family should make decisions, low levels of education, and
maintaining prognosis secrecy (Selsky et al., 2012).
Hospice Utilization
Overall, 19 studies examined aspects of hospice use among Hispanics.
Willingness to Use Hospice Care. Two studies discussed Hispanics willingness to use hospice
care. Cuban Americans (76.4%) and non-Cuban Hispanics (82.5%) were less willing to use
hospice compared to Whites (94.4%; Park et al., 2016). Among caregivers of Latino patients,
83% reported a willingness to use hospice (Ko et al., 2017).
Hospice Enrollment Rates. Thirteen studies discussed hospice enrollment rates among Hispanics
relative to Whites, with mixed results. Eight studies found that Hispanics were less likely to
enroll in hospice and had lower enrollment rates compared to Whites. Three studies reported that
Hispanic cancer patients were significantly less likely to enroll in hospice compared to Whites
(Sammon et al., 2015; Smith et al., 2009; Taylor et al., 2017),
one of which used a national
sample (Sammon et al., 2015).
This finding also was supported among four nationally
representative studies of trauma patients (Haines et al., 2018),
Medicare beneficiaries with heart
failure (Givens et al., 2010),
Medicare decedents (Hanchate et al., 2009; Wang et al., 2019),
and
New Jersey hospice patients (Colón & Lyke, 2015).
Just three studies reported that Hispanics had higher rates of hospice enrollment compared to
Whites. Hispanic nursing home residents from a national dataset (Frahm et al., 2012),
urban
hospital patients (Johnson et al., 2020),
and patients who had received a palliative care
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consultation (Fosler et al., 2015)
all had higher rates of hospice use. Race was not a significant
predictor in hospice enrollment among White and Hispanic cancer patients from the Northeast
and Texas areas (Loggers et al., 2013) and among Pennsylvania patients referred to inpatient
palliative care (Worster et al., 2018).
Among studies examining hospice utilization, compared to Blacks/African Americans, seven
studies reported higher hospice enrollment among the following Hispanic groups: cancer patients
(Smith et al., 2009; Taylor et al., 2017); trauma patients (Haines et al., 2018); Medicare
beneficiaries with heart failure (Givens et al., 2010); Medicare decedents (Hanchate et al., 2009);
patients who received a palliative care consultation (Fosler et al., 2015); and New Jersey hospice
patients (Colón & Lyke, 2015). However, two studies reported that among metastatic cancer
patients (Sammon et al., 2015)
and Medicare decedents (Wang et al., 2019),
Blacks/African
Americans had higher odds of hospice utilization than Hispanics. When compared to Asians, five
studies reported higher enrollment among the following groups of Hispanics: advanced cancer
patients (Smith et al., 2009); Medicare beneficiaries with heart failure (Givens et al., 2010);
patients who received a palliative care consultation (Fosler et al., 2015); Medicare decedents
(Wang et al., 2019); and trauma patients (Haines et al., 2018).
Only one study of New Jersey
hospice patients reported that Latinos were less likely to use hospice than Asians (Colón & Lyke,
2015).
Other Aspects of Hospice Enrollment. One study examined hospice enrollment in the last three
days before death, finding no difference in enrollment by racial groups (Smith et al., 2009).
In
addition, one study examined hospice referral among metastatic cancer patients and found that
race did not significantly predict referral rates (Sharma et al., 2015).
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Geographic Location. Two studies examined differences in hospice use based on geographic
location. Among 12 U.S. states from the Surveillance, Epidemiology, and End Results (SEER)–
Medicare database, Hispanics had lower rates of hospice care than Whites in urban areas, with
no difference found in use between Hispanics and Whites in rural areas (Hardy et al., 2011).
In a
nationally representative sample, Blacks (60%) were more likely than Whites (45%) or
Hispanics (39%) to have received care from a hospice in the South (Price et al., 2017).
In
addition, Hispanics, on average, received care from hospice facilities with 20% of their patients
identifying as Hispanic (Price et al., 2017).
Interventions to Improve Hospice Use. We found one study, a RCT, that tested the efficacy of a
culturally-tailored intervention to improve palliative and hospice outcomes among Latinos
(Fischer et al., 2018).
Investigators found no significant difference in hospice use; enrollment
remained high between the control (83.6%) and intervention (79.7%) group (Fischer et al.,
2018).
Hospice Outcomes
Twenty-three studies analyzed hospice outcomes.
Length of Stay. Nine studies examined length of stay (LOS; i.e., duration of hospice enrollment)
among Hispanics, with three studies finding that Hispanics were more likely to have longer LOS
in hospice compared to Whites (Givens et al., 2010; Park et al., 2012; Wang et al., 2019).
Specifically, Park et al. (2012)
reported that Hispanics had a longer median LOS (98.8 days),
compared to African Americans (90.3 days) and Whites (88.2 days). A nationally representative
study found that Hispanic heart failure patients had a longer median LOS of 19 days, compared
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to Blacks (14 days), Whites (13 days), and other racial and ethnic groups (10 days; Givens et al.,
2010).
In a national sample of Medicare decedents, Hispanics (11%) were more likely to have a
LOS of 180 days or longer compared to Whites (10.1%), African Americans (9.5%), and Asian
Americans (6.2%; Wang et al., 2019).
In contrast, four studies reported similar hospice LOS among Whites and Hispanics (Adams et
al., 2008; Colón & Lyke, 2015; Smith et al., 2009; Wang et al., 2019); one which used a national
dataset (Wang et al., 2019).
Among these, three studies found no significant difference in LOS
between Latinos/Hispanics, European Americans/Whites, Asians, and African Americans/
Blacks (Colón & Lyke, 2015; Smith et al., 2009; Wang et al., 2019).
Among Mexican and
Anglo-American Medicare decedents, ethnicity did not significantly predict LOS (Adams et al.,
2008).
However, one multi-year study reported mixed results when comparing LOS among
Hispanics and Whites; in some periods Hispanics had longer LOS than Whites and in other years
they had shorter LOS (Hardy et al., 2012).
A RCT assessing the efficacy of a culturally tailored
intervention for Latinos found no significant difference in mean LOS among the intervention (M
= 54.7) and control (M = 58.5) group (Fischer et al., 2018).
Live Discharges and Hospitalizations. Nine studies—only one using a nationally representative
sample (Frahm et al., 2015)—examined live discharges (i.e., discharged from hospice prior to a
patient’s death) and hospitalizations occurring during hospice stay. Four studies used data from
the same large non-profit hospice agency in New York City (Luth et al., 2020; Russell et al.,
2017; Russell et al., 2019; Russell et al., 2020) and two used data from the Texas Cancer
Registry (Taylor et al., 2017; Taylor et al., 2019).
In a national sample of Medicare decedents,
African Americans (13%), Hispanics (11.1%), and Asian Americans (10.9%) were more likely to
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disenroll from hospice than Whites (8.1%; Wang et al., 2019).
Being Hispanic and Black/
African American was associated with greater odds of live discharge compared to Whites (Luth
et al., 2020; Russell et al., 2020). Hispanic hospice patients also had an elevated risk of
hospitalization compared to Whites (Frahm et al., 2015; Luth et al., 2020; Russell et al., 2017;
Russell et al., 2019; Wilson et al., 2018).
Relative to Hispanics, Russell et al. (2017)
reported higher odds of hospitalization among
Blacks, whereas Russell et al. (2019)
and Luth et al. (2020)
reported lower odds of
hospitalization among Blacks. Asians reported lower odds of hospitalization than Hispanics
(Russell et al., 2017; Russell et al., 2019).
Relative to Whites, Hispanics also had greater odds of
transferring to another hospice facility (Russell et al., 2017; Russell et al., 2019) or becoming
ineligible for hospice due to extended prognosis (Russell et al., 2019).
Two studies of ovarian
cancer patients showed no significant differences in live discharge rates between Whites,
Hispanics, Blacks, and other ethnic/racial backgrounds (Taylor et al., 2017; Taylor et al., 2019),
and no difference in rate of multiple disenrollment from hospice by race/ethnicity (Taylor et al.,
2019).
Site of Death. Four studies examined site of death (i.e., location of patient death) among
Hispanics. Hispanics were less likely to die under the care of hospice than Whites in a nursing
home setting (Frahm et al., 2015)
and among ovarian cancer patients (Taylor et al., 2017).
Hispanic ovarian cancer patients also were more likely to die in hospice compared to Blacks
(Taylor et al., 2017).
A study of caregivers found no difference between Hispanic and non-
Hispanic family members in rates of hospice patients dying in their preferred setting (Kirkendall
et al., 2015).
Conversely, among recipients of an inpatient palliative care consultation, Hispanics
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had a significantly higher likelihood of dying in hospice compared to Whites (Johnson et al.,
2020).
Quality and Type of Hospice Care. Four studies analyzed quality of care received by patients and
caregivers and/or type of hospice care received. Caregivers of Hispanic patients were 71% more
likely to feel that the hospice team acted against patient wishes, compared to caregivers of non-
Hispanic patients (Kirkendall et al., 2015).
They also were 47% less likely to be satisfied with
the hospices’ religious and spiritual support; specifically, they were more likely to report the
patient received more support than they wanted (Kirkendall et al., 2015).
However, caregivers of
Hispanic and non- Hispanic patients were equally satisfied with the information and services
provided by the hospice team (Kirkendall et al., 2015).
Price et al. (2017) found that Hispanics
and Blacks from a nationally representative study were more likely than Whites to receive care
from poorer quality hospice facilities. Hispanics (52%) and Blacks (48%) also were more likely
to receive hospice care from a for-profit than Whites (39%; Price et al., 2017). Among 500
Medicare hospice decedents, 9% of Hispanics had access to volunteer services compared to 22%
of Whites; however, Hispanics and Whites had equal access to all other hospice services (Adams
et al., 2006).
In a subsequent study, there were no differences between Mexican and Anglo-
American Medicare decedents in total hospice visits and visits from a registered nurse (Adams et
al., 2008).
Symptom-Related Outcomes. Three studies analyzed patient- reported, symptom-related
outcomes. Beltran (2018)
found that Hispanics experiencing pain at end of life were 3.8 times
more likely to experience end-stage restlessness than Whites and Hispanics without pain.
Hispanics also were less likely to have a pain-free discharge and less likely to receive an opioid
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analgesic compared to non-Hispanics (Cea et al., 2016).
Hispanic hospice patients had
significantly more negative and fearful beliefs about the analgesic medication relative to non-
Hispanics (Wilkie et al., 2017).
Discussion
Main Findings
This systematic literature review focused on U.S. Hispanics’ hospice experiences included 41
studies that largely reported expected ethnic disparities in hospice knowledge and awareness, as
well as some mixed results around hospice attitudes, use, and outcomes.
Hospice Enrollment and Outcomes
We found a preponderance of evidence reporting on the underuse of hospice among Hispanics,
with 62% of studies of hospice use reporting lower rates among Hispanics (as compared to
Whites). This review also highlights research areas that require more attention in order to better
understand these hospice-related disparities. For example, none of the studies included in this
review examined reasons for hospice refusal as reported directly by seriously ill Hispanic
patients during a hospice referral process. To increase hospice use among Hispanic, we first must
understand reasons for refusal and find ways to provide care while accommodating patient
preferences.
Several studies identified higher rates of live discharge from hospice among Hispanics. Growing
literature has shown that live discharges are an indicator of poor quality of care as they are
associated with worse health/prognosis (Kutner et al., 2004),
hospice agency’s inability to meet
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patient’s needs (CMMS, 2021),
and greater likelihood of hospitalization and hospital death (IoM,
2015; Pathak et al., 2014; Teno et al., 2015).
Future research is needed to examine factors
contributing to live discharge among Hispanics and to test interventions aimed at reducing these
discharges rates.
Inclusion of Hispanic Subgroups and Hispanic Minorities
The majority of studies included in this review grouped all Hispanic nationalities together. This
homogenous perception of Hispanic may explain some of the mixed findings among the studies.
Furthermore, only two of the 41 studies assessed respondents within specific Hispanic
nationalities (Colón, 2012; Park et al., 2016).
One study demonstrating differences in willingness
to use hospice among nationalities (Park et al., 2016).
In addition, only four studies solely
examined Hispanics (Colón, 2012; Fischer et al., 2018; Ko et al., 2017; Selsky et al., 2012).
Further research examining differences in hospice experiences among Hispanic subgroups is
needed to gain a more nuanced understanding of how to best serve members of this diverse
population.
In addition to examining differences among Hispanic nationalities, future research is needed to
examine end-of-life experiences of undocumented Hispanic immigrants, a tremendous gap on the
current research. None of the studies included in this review examined or discussed
undocumented immigrants, yet over 80% of 11.7 million undocumented immigrants in the U.S.
are Hispanic (Krogstad, 2020).
Study Setting and Study Design
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Only one study was based in California (Ko et al., 2017),
the state with the largest Hispanic
population; and six studies were based in Texas (Adams et al., 2006; Adams et al., 2007; Adams
et al., 2008; Loggers et al., 2013; Taylor et al., 2017; Taylor et al., 2019),
the state with the
second largest Hispanic population. No study included states with the third (Arizona) and fourth
(New Mexico) largest Hispanic populations (Krogstad, 2020).
Future research should use
nationally representative samples or, minimally, samples selected from multiple states with large
Hispanic populations. In addition, 18 (43%) of the 41 studies used similar datasets that had been
previously examined by others, which may contribute to an overemphasis on findings from the
same data sources. Our findings point to a need for further research among Hispanic populations,
including well-powered Hispanic subgroups.
Hospice Knowledge
The majority of studies assessing hospice knowledge found Hispanics to be less knowledgeable
compared to other ethnic/racial groups. Low rates of hospice knowledge among Hispanics speak
to the need for interventions specifically targeted to Hispanics.
Interventions to Increase Hospice Awareness and Enrollment
Despite widespread documentation of lack of hospice knowledge and lower enrollment among
Hispanics, only one study in this review aimed to increase hospice enrollment and LOS (Fischer
et al., 2018),
and that study did not find significant improvements among the intervention arm.
Few studies have tested interventions to increased hospice use or knowledge among Hispanics
(Chung et al., 2017; Quinones-Gonzalez, 2013) or examined quality of care indicators or
symptom related outcomes among Hispanics, and those that did found worse outcomes among
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Hispanics relative to Whites. The dearth of intervention research targeted at improving hospice
knowledge and acceptance is a large gap in the current literature that merits attention. These
findings speak to the urgent need to test new approaches and interventions to improve quality of
care and symptom outcomes for Hispanics. Moreover, future research is needed to investigate
culturally-competent models of hospice care that may better align with Hispanics’ value systems.
The lack of culturally sensitive care may contribute to the lower rates of hospice enrollment and
higher rates of live discharges.
Strengths and Limitations
To our knowledge, this is the first review to examine all aspects of hospice among Hispanics:
knowledge and awareness, utilization, and outcomes. Additionally, this review employed strong
methodological rigor, assessed the quality of each study, and used a broad search strategy across
three databases to capture all relevant studies about Hispanics and hospice. Limitations of our
study include the heterogeneity of study outcomes making it challenging to summarize and
condense results.
Conclusion
Hospice has been a Medicare benefit for more than 38 years, yet over the past 15 years there has
been relatively little research focused specifically on Hispanics’ experience with hospice and
almost no research among undocumented Hispanic immigrants who may experience even further
barriers due to their lack of eligibility for U.S. healthcare benefits, including Medicare and
Medicaid. With more than 18.5% of the U.S. comprised of Hispanics (U.S. Census Bureau, n.d.)
this research gap is concerning. Even more compelling is that existing research has found
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significant disparities in hospice use and experiences among Hispanics, with few studies focused
on addressing these documented disparities. Intervention studies and culturally competent
models of hospice care focused on improving access to and quality of care for terminally ill
Hispanics are needed.
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CHAPTER III: ADDRESSING BARRIERS TO HEALTHCARE FOR
UNDOCUMENTED IMMIGRANTS: PALLIATIVE CARE TEAM MEMBERS’ VIEWS
Introduction
In the United States, the undocumented immigrant population ranges from 10.5 million to
12 million and makes up about 3.2%-3.6% of the population (Kamarck & Stenglein, 2019).
In
2019, the Migration Policy Institute estimated that 67% of undocumented immigrants are from
Mexico and Central America and 8% are from South America, with 72% speak Spanish (MPI,
2019).
California has the highest share of undocumented immigrants with 2.3 million (PPIC,
2023),
representing over 6% of the state’s population (PPIC, 2019).
Within California, 77% of
undocumented immigrants are from Mexico and Central America, 2% from South America,
while 76% speak Spanish (MPI, 2019).
Undocumented immigrants face numerous barriers to obtaining healthcare, largely due to
fear of deportation and limited access to healthcare. About 71% are uninsured and are excluded
from enrolling in health insurance provided under the Patient Protection and Affordable Care Act
(Capps et al., 2013).
They are less likely to use the emergency department and less likely to
receive ambulatory care in comparison to their documented counterparts. In a California study,
of the 34.7% of undocumented immigrants who used the emergency department as their primary
source of care, only 17.9% received ambulatory care (Wallace et al., 2013).
Limited access to medical care and delayed care for illness has led to greater symptom
burden among undocumented immigrants, who often present themselves at emergency rooms
with advanced disease stage, making it more challenging to plan their care (Metchnikoff et al.,
2018).
Programs for seriously ill patients, such as palliative care and hospice services, lessen
patient’s symptoms and improve their quality of life (Dhiliwal & Muchaden, 2015; Meier, 2011).
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However, a nationwide survey found that 32% of U.S. hospice agencies limit or do not enroll
undocumented patients (Gray et al., 2017).
Their lack of eligibility for hospice services or
palliative care limits them to treatment through outpatient clinics or emergency rooms,
contributing to poor end-of-life care outcomes. Overall, they are at greater risk of dying from
untreated and undiagnosed chronic diseases (Jaramillo & Hui, 2016; Metchnikoff et al., 2018)
such as cancer and heart failure, the top two leading causes of death among Hispanics (CDC,
2019).
Despite a growing body of research on undocumented immigrants, few studies have
focused on seriously ill patients and care at end-of-life. Existing studies have largely centered on
end-stage renal disease. In addition, research on healthcare providers’ perspectives on
undocumented immigrants’ end-of-life care experiences is nearly nonexistent. Some healthcare
provider commentaries have discussed the difficult situations undocumented Hispanic
immigrants face when approaching end-of-life (Jaramillo & Hui, 2016; Karapetyan et al., 2018),
however, no empirical studies have documented these challenges. This study aims to learn about
challenges and facilitators palliative care team members encounter in caring for seriously ill
undocumented immigrants and the factors affecting their access to care.
Methods
We conducted semi-structured, individual telephone interviews among a range of
palliative care team members from two safety-net hospitals in California. The study was
determined exempt by the University of Southern California’s Institutional Review Board.
Eligibility & Recruitment
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We used purposeful sampling to recruit palliative care team members from two public
hospitals serving primarily Medicaid and uninsured populations in a large urban city. Eligibility
criteria included being a member of an inpatient palliative care team that serves seriously ill,
Hispanic undocumented immigrants.
The PI (V.C.) sent a study information sheet to palliative care directors at both public
hospitals informing them of the study’s aim and seeking their consent to participate. Both
palliative care directors consented and provided the PI with contact information for each team
member. The PI subsequently contacted each team member via email, sent study information,
gauged study interest, and answered questions. All team members were invited to participate in a
30-minute telephone-based, audiotape-recorded interview. All team members from both
hospitals consented and took part in an interview.
Interview Protocol
We used a semi-structured protocol to elicit palliative care healthcare provider’s
perspective on the challenges and facilitators they encounter in caring for seriously ill
undocumented immigrants and the factors affecting access to care. We asked respondents about
their experience caring for undocumented immigrants, the stage of illness patients are in when
they encounter them, referrals made by provider’s team, potential patient follow-up systems, and
gaps in care. Our interview protocol explicitly referenced Andersen’s Behavioral Model of
Health Services Use (Andersen, 1968; Andersen, 1995; a. individual’s predisposing
characteristics; b. enabling resources that facilitate use; c. individual’s perceived need for care)
and the NIA Health Disparities Research Framework (NIA, n.d.).
Our protocol was reviewed for
face validity by experts in palliative care research, clinical practice, and policy.
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Participants did not receive an incentive for participation. A doctoral student (V.C.)
conducted the interviews and disclosed her role on the research study to participants. Per IRB,
participants received a study information sheet in lieu of a written consent form. At the end of
the interview, we collected demographic information, including age, gender, ethnicity, country of
birth, current employment position, and duration of healthcare experience.
Analysis
Audio-taped recordings were transcribed verbatim and transferred to an Excel sheet (Bree
& Gallagher, 2016; Meyer & Avery, 2009) for analysis. Using thematic analysis (Braun &
Clarke, 2006), researchers (V.C.; L.H.) familiarized themselves with the data by reading through
the transcriptions, and each researcher generated a list of initial codes. Next, both researchers
convened to review the initial list of codes and then the entire research team (V.C.; L.H., S.E.)
discussed the codes until a single list of codes was established. The two researchers (V.C.; L.H.)
returned to the transcripts and independently coded each transcript using the list of codes. The
researchers met again, cross-checked, and discussed their final codes until 100% agreement was
reached. Final codes were discussed by the research team and themes were developed from the
codes. Thematic saturation was reached after 8
th
interview, however researchers continued to
code all transcripts. Final themes were shared with the directors of palliative care at the two
hospitals for feedback. Review of findings from the directors did not alter the final themes.
Results
From November 2022 to January 2023, we interviewed 11 palliative care team members
from two safety-net hospitals in California. Interviews lasted between 11 and 29 minutes.
Participant Demographic Characteristics
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Table 4 presents demographics characteristics of the participants. Of the 11 team
members, 10 (90.9%) were female. Less than half (45.5%) were white, three (27.3%) were
Hispanic/Latino, two (18.2%) were Asian, and one (9.1%) was Black. Five (45.5%) were
foreign-born. Over half (54.5%) had worked in healthcare for six to 10 years, two (18.2%)
between 11 and 15 years, and three (27.3%) had worked in healthcare for over 20 years. All team
members had been in their current position for less than 11 years. Two (18.2%) had worked in
their current position for less than a year, five (45.5%) between one and five years, and four
(36.4%) between six and 10 years. The team members held a variety of positions: five (45.5%)
were physicians, two (18.2%) were nurse practitioners, two (18.2%) were social workers, one
(9.1%) was a nurse, and one (9.1%) a chaplain/spiritual counselor.
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Table 4. Participant Characteristics (N = 11)
Age (mean ± SD)
46.3 ± 8.1
Gender
Male
1 (9.1%)
Female
10 (90.9%)
Ethnicity
White/Caucasian
5 (45.5%)
Hispanic/Latino
3 (27.3%)
Asian/Pacific Islander
2 (18.2%)
African American/Black
1 (9.1%)
US Born
Yes
6 (54.5%)
No
5 (45.5%)
Years working in healthcare
6 to 10
6 (54.5%)
11 to 15
2 (18.2%)
Over 20 years
3 (27.3%)
Years working in certain position
Less than 1 year
2 (18.2%)
1 to 5
5 (45.5%)
6 to 10
4 (36.4%)
Position
Nurse Practitioner
2 (18.2%)
Nurse
1 (9.1%)
Social Worker
2 (18.2%)
Chaplain/Spiritual Counselor
1 (9.1%)
Physician
5 (45.5%)
Themes
We identified 14 themes falling under three overarching thematic categories: provider-perceived
patient care-seeking behaviors and challenges, provider care challenges, and facilitators and
recommendations for improving care for undocumented immigrants. Themes are presented
below and in Table 5.
Provider-Perceived Patient Care-Seeking Behaviors and Challenges
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Under this thematic category are themes arising from the healthcare provider perspective of
patient-level barriers and challenges related to accessing healthcare.
Complications of Postponing Care: All team members shared the health consequences they
observed due to undocumented patients delaying necessary care and how this impacts the care
they were able to provide. According to one physician:
“It impacts the care because the more advanced the disease, typically, the fewer the
treatment options and the shorter your [survival] time will be. There are some cancers …
or other illnesses, that if people were able to present sooner, there would be a higher
chance of cure or prolonged survival. When people present late, very often treatment
options are more limited, the chance for cure or prolonged survival is more limited. And
the disease itself has already caused some changes to the body. Those kinds of things that
aren’t necessarily possible to overcome.” (HCP 8)
A nurse practitioner shared how these delays in care impact the type of care provided:
“…We ended up having more goals of care conversations, more end-of-life
planning…treating more intense symptoms like pain, nausea, constipation.” (HCP 6)
Financial Burden: Nearly all palliative care team members mentioned undocumented
immigrants’ fear of incurring financial costs due to their lack of health insurance and their need
to work to support their families. A social worker stated:
“The hugest challenge is when you have an undocumented person who is the primary
wage earner in their home. And when they get sick, they’re not able to work. So,
therefore, they can’t get unemployment, …state disability, …Social Security Disability.
They’re …stuck with no income because they can’t provide for their families. If they have
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a wife, then the wife ends up having to try to go to work and work under the table.” (HCP
9)
Fear of Deportation: Nearly all team members also discussed that undocumented immigrants
also avoid medical care due to fear of being reported to civil immigration enforcement. As a
physician noted:
“[Undocumented immigrants] are scared to come in for care, because they’re worried
that they’re going to get reported to someone, or that they come to the hospital that ICE
(U.S. Immigration and Customs Enforcement) will get involved and they’ll get
deported.” (HCP 11)
Transportation: Several team members described how transportation barriers can impact
undocumented immigrants’ healthcare access. According to one physician:
“Sometimes it’s their own access to transportation, to be able to make it to
appointments…transportation is a big [challenge].” (HCP 7)
Health Literacy: Some HCPs noted that low health literacy impacts patient care. One physician
described how health literacy affects how undocumented patients understand relevant health
information:
“It often affects their language and ability to understand instructions. They often—but
not always—did not complete middle school or high school. And their… healthcare
literacy is lower than other places that I’ve worked.” (HCP 1)
Family Support: A couple of team members mentioned the difficulty faced by undocumented
patients’ families in offering support and comfort during serious illness. A chaplain explained
that:
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“… more often their local family support is thinner, by definition, because often the bulk
of their family reside in a different country. Or…the family might be local, but they’re
hesitant to visit because they’re concerned about triggering unwelcome immigration
attention, so they are a little bit down low about supporting their loved one who’s in the
hospital.” (HCP 2)
Awareness and Misconceptions of Palliative Care: When asked how undocumented patients
react to the palliative care team, a couple of team members discussed patients’ lack of palliative
care knowledge, often confusing it with hospice. A physician emphasized:
“Palliative care is something that most people don’t have a ton of familiarity with. I think
I get equal reactions from undocumented or documented patients who are like, “Oh, are
you the hospice team or am I dying, and what are you?” And usually people respond
well, once we explain what we’re there for, and how we’re just an extra layer of support
to help them.” (HCP 11)
Provider Care Challenges
This thematic category refers to the common issues in providing palliative care to undocumented
patients.
Language Barriers: Many team members shared how they experience difficulties
communicating with patients due to their inability to speak the patient’s language and/or lack of
interpreter. One physician described this experience:
“...a significant percentage of the time, patients who identify as Spanish speaking are
actually indigenous from Central America. And they speak a dialect for which I can’t get
an interpreter, most of the time. And that just adds an extra layer of time and effort.
Something’s always lost in the translation.” (HCP 1)
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Longer Process: Due to their limited access to resources, most team members discussed how
they need to work around constraints to provide care to undocumented patients. According to
one nurse practitioner:
“…[We] encountered troubles getting them access to care. For example, I have a patient
who needs urgent chemotherapy. And the next available appointment is four weeks from
now. Someone like a patient in our population doesn’t have the option to go somewhere
else that might be able to give him more immediate care. And that’s pretty common with
any kind of outpatient clinical appointment. But it is hard to expedite medical care [for
undocumented immigrants], even in the hospital.” (HCP 6)
Cultural Barriers: Respondents discussed how cultural values and differences can hinder
communication between medical providers and patients, as a chaplain noted:
“sometimes that patient might have so much deference for a doctor that they won’t ask a
question of the doctor, or they won’t disagree with a doctor, when the doctor gets
something wrong, like assuming that maybe pain management is the most important thing
to you, when really the person… would choose to be in pain so that they can stay awake
for spending time with the grandkids. For example, patient might not ever say [that] to
the doctor, oh, you have it all wrong, I really, I’ll be in pain; I want to stay awake for my
grandkid. But because of their respect for the profession of a doctor, they’ll never say it
out loud.” (HCP 2)
Facilitators and Recommendations
This thematic category encompassed effective strategies and suggestions used by palliative care
providers to improve care for undocumented immigrants.
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Awareness of Care Options and Reassurance: Nearly all team members highlighted the need to
explain care options to undocumented patients and assure support regardless of immigration
status. A physician emphasized the importance of communication in this process:
“… a very clear communication … genuine and respectful communication with them. To
explain what [is] going on, what they need to get done. Or what [we] can do to help and
show that you care, then I think that would make a difference. So, we want to… take our
time to sit down and understand what they are going [through]to be able to give the best
support that they need.” (HCP 10)
Importance of Social Worker and Community Resources: Team members considered social work
crucial in addressing challenges encountered in working with seriously ill undocumented
immigrants, praising social workers’ significant role. According to one physician:
“I think social work honestly, is [the most important] because they sort of are able to
marshal all of the more specific resources that people need… Like that moment-to-
moment help, they’re very good at helping us unlock whatever the patient is able to get.
Obviously, as an undocumented patient, it can be harder for them to get those things. But
if we can get them connected with even a more basic form of Medi-Cal (public health
insurance program in California that provides healthcare coverage to low-income
individuals and their families), then all those things become possible. Social work is
definitely the key for that. Transportation vouchers, all that kind of stuff.” (HCP 8)
Team members emphasized linking patients to community resources and navigating healthcare
systems to assist their undocumented patients. One social worker detailed some connections:
“.. they may need… food resources, I can provide food resources for them, if they need
mental health, because they have a loss, we have free services for that. I can do stuff like
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that. You know, I can call 211 (telephone helpline services in the United States and
Canada that provides free, confidential information and referrals to individuals seeking
help with social services, healthcare, and other human services) … I can refer them to
some mortuaries that I’ve worked with in the past that I know that they’re Spanish
speaking, and I know that they’re the ones that can ship a body out of the country… But
that’s been years of trying to meet people and trying to start relationships with people.
So, you’re able to [give] the best that you can for your patient.” (HCP 9)
Expand Palliative Care Awareness and Knowledge: Respondents identified the need to increase
palliative care awareness and knowledge among team members and patients. A physician
suggested:
“If [patients] knew [palliative care] exist, I wonder if they would ask more for [these
services]. Right? So… our work is an everyday thing that we mentioned the concept of
palliative care... They’ve never heard of the services before. So that is a two-sided thing
[increasing awareness] with providers, but also increasing awareness in patients.” (HCP
3)
Improve Cultural Competence: A couple of team members highlighted the importance of
culturally sensitive care and communication. A physician said:
“I think making sure that we have providers who are able to provide culturally and
spiritually sensitive care to people, because I think a lot of that drives how people view
their healthcare, their own feelings on what medicine can provide.” (HCP 7)
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INSERT TABLE 5
Discussion
This is the first study to identify challenges and facilitators palliative care team members
encounter in caring for seriously ill undocumented immigrants, the factors affecting access to
care in this population, and recommendations to improve care for undocumented immigrants.
Through the perspective of two palliative care teams in California, this study provides a
better understanding of how delaying care can result in palliative care providers treating “more
intense symptoms” and seeing more “complicated, or more atypical disease in young people.”
Although a provider in our study mentioned how she ends up having to focus on goals of care
conversations due to patients’ advanced disease state, other end-of-life care studies have found
that there is less time for end-of-life planning among the undocumented population (Metchnikoff
et al., 2018; Nuila, 2012; Smeltz, 2016).
Additionally, our findings highlight the need for
policymakers to address the barriers causing this delay in care, namely in ensuring
undocumented immigrants have more routine care to address health problems earlier in the
disease trajectory. A few team members mentioned their hopes for increasing access to care for
undocumented immigrants. California’s latest and recent Medi-Cal expansion could help more
than a quarter million undocumented immigrants aged 50 and older receive comprehensive
preventative care (California Governor’s Office, 2022).
By January 1, 2024, the state of
California hopes that all adults ages 26 to 49 have full-scope Medi-Cal coverage through this
expansion effort (California Governor’s Office, 2022).
Important to note, our study findings suggest that expanding undocumented persons’
access to Medi-Cal alone will be insufficient in dressing the barriers to access to healthcare. Our
study found other barriers, such as need to maintain employment, lack of transportation, and fear
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of immigration, that also play a significant role in preventing access to timely medical care. A
literature review of barriers to preventative health services for undocumented immigrants
explored published articles from 2005 to 2013, finding that most studies list work conflicts, lack
of transportation, cultural competency, lack of translation services, fear of deportation,
communication barriers, and limited financial resources linked to underutilization (Hacker et al.,
2015).
These barriers also were common themes in our study, suggesting that they persist across
the life span for undocumented populations.
As evident in previous research, the most challenging barrier to care is undocumented
immigrants’ fear that seeking healthcare would result in being reported to authorities (Campbell
et al., 2014),
leading to their fear of sharing information with providers (Yu et al., 2020)
and their
mistrust of providers (Biswas et al., 2011).
Undocumented immigrants are less likely to have a
usual source of care (Ortega et al., 2007)
and have fewer physician visits and hospital admissions
(Beck et al., 2000).
Unfortunately, in recent years, the anti-immigrant rhetoric associated with the
2016 presidential campaign (Nwadiulo et al., 2021), and the COVID-19 pandemic (Garcini et al.,
2020)
have contributed to significant decreases in primary care use among undocumented
immigrants.
Palliative care team members in this study report that building rapport with patients by
explaining their care options, the care they are about to receive and by connecting them with
community resources, they can overcome issues of distrust and facilitate access to subsequent
care. Recent strategies introduced by CAPC (Center to Advance Palliative Care) help palliative
care team members improve care for undocumented immigrants, such as knowing your local
communities and establishing relationships with community groups (Marcotte & Schoenfarber,
2022).
The need for establishing connections with the community underscores the crucial role of
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social workers in addressing the social determinants of health experienced by undocumented
immigrants. In addition, the social workers on both teams were acknowledged for their
prominent role in helping and connecting undocumented patients with resources.
In keeping with findings from previous research (Cardenas et al., 2021; Enguidanos et al.,
2020),
our findings also show a lack of awareness and misperceptions of palliative care among
undocumented immigrants. More than focusing on educating patients about palliative care,
providers mentioned the need to educate healthcare providers about palliative care, which will
then result in patients learning about palliative care from their providers.
To our knowledge, this study is the first to explore the perspectives of palliative care
healthcare providers on the challenges they encounter in caring for seriously ill undocumented
immigrants. This study reflects findings from a purposive sample of healthcare providers on two
palliative care teams in California and is not intended to be generalized. Healthcare policies and
attitudes towards undocumented immigrants can vary widely from state to state, making it
crucial for future research to explore these geographic differences. The study also focused on
healthcare providers who care for seriously ill undocumented immigrants who have accessed and
entered the healthcare system and does not represent the experiences of undocumented
immigrants unable to navigate the healthcare system. In addition, the challenges palliative care
teams and undocumented immigrants face may vary based on ethnicity, country of origin, and
socioeconomic status.
This study offers insights into the challenges palliative care providers and seriously ill
undocumented immigrants face when navigating care, as well as recommendations to improve
care for these patients. Our findings underscore the need for studies that address the barriers
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undocumented immigrants face. Findings also point to the need for research that elicits the
perspectives of seriously ill undocumented patients.
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CHAPTER IV: ADVANCE CARE PLANNING AMONG HOSPITALIZED HISPANIC
PATIENTS: A PILOT STUDY OF THE ROLE OF ACCULTURATION AND
HEALTHCARE STEREOTYPE THREAT
Introduction
Advance care planning (ACP) is the process that supports adults at any age or stage of health in
understanding and preparing for future medical care in the event that they are not able to
communicate their care preferences (Sudore et al., 2017).
ACP conversations between patients
and healthcare providers are discussions about their values, goals, preferences for medical
treatment and end-of-life care. ACP conversations may result in the development of advance
directives and assignment of a durable power attorney for health care. An advance directive is a
legal document that allows individuals to outline their medical treatment and end-of-life care
wishes in the event they are unable to make the decisions themselves. A durable power of
attorney for health care is a legal document that allows an individual to assign a proxy to make
medical decisions on their behalf if they are unable to do so.
Engagement in ACP conversations can help ensure that care is consistent with patients’
preferences (Sudore et al., 2010), by increasing the likelihood that the patient dies in their
preferred place (Khan et al., 2013), and by improving the quality of life of patients and their
caregivers (Detering et al., 2010; Teno et al., 2007; Wright et al., 2008). According to a
systematic literature review of 150 studies, 36.7 percent of U.S. adults have engaged in ACP
activities (Yadav et al., 2017).
Ethnic minorities are less likely to engage in ACP as compared to Whites, and Hispanics
have shown far less ACP engagement compared to other ethnic minority groups (Harrison et al.,
2016; Perkins et al., 2002; Portanova et al., 2017; Smith et al., 2008). Hispanics demonstrate the
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lowest prevalence of engagement in ACP conversations, advance directive completion, and
appointment of a durable power of attorney for health care (Carr 2011; Choi et al., 2020; Perkins
et al., 2002). Hispanics are less likely to have heard of advance directives (Perkins et al., 2002),
less likely to be aware that they can have ACP discussions (Carr, 2012), and are less likely to
talk about advance directives with healthcare providers and family members (Wittenberg-Lyles
et al., 2008).
A few studies have explored the factors associated with the lower rates of ACP
engagement among Hispanics. Some have examined how acculturation, the process through
which individuals from one culture adapt to the new practices and values of another culture by
modifying their cultural norms and beliefs, impacts ACP involvement among Hispanics (Kelley
et al., 2010; Wittenberg-Lyles et al., 2008). All concluded that Hispanics with low acculturation
levels were less likely to complete an advance directive.
Healthcare stereotype threat is the psychological experience of confronting stereotypes in
the healthcare system. Experiencing healthcare stereotype threat has been found to negatively
impact healthcare outcomes among LGBT patients (Ojeda-Leitner & Lewis, 2021) and Blacks
(Aronson et al., 2013; e.g. greater dissatisfaction with healthcare and physician distrust; poorer
mental and physical health). However, the impact of healthcare stereotype threat has not been
studied for Hispanic patients. Given the role healthcare stereotype threat plays in medical
interactions between minority patients and healthcare providers, it may also impact ACP
engagement. The aim of this study is to explore the relationship between ACP activities and
healthcare stereotype threat among Hispanic patients, as well as the relationship between ACP
activities and language acculturation.
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Methods
We used secondary data collected from a feasibility study of a palliative care educational
intervention (Enguidanos et al., 2022) enrolling 50 Spanish-speaking, Hispanic patients, who
were over the age of 40 and hospitalized in a large, urban, public hospital. This study was
reviewed by the University of Southern California’s Institutional Review Board and determined
to be exempt.
Study Sample
Participants eligible for the palliative care educational study (Enguidanos et al., 2022) self-
identified as Latino or Hispanic, were diagnosed with a life-limiting chronic illness, spoke
Spanish as their primary language, and were cognitively able to participate. Hospitalized patients
were referred to the research coordinator by the palliative care and internal medicine hospital
teams. The research coordinator approached patients at bedside, provided a study information
sheet, and introduced the study. Those who met the study eligibility criteria were invited to
participate in the study. Prior to being exposed to the palliative care education intervention,
participants responded to a pre-test survey which included the healthcare stereotype threat scale,
the Brief Acculturation Scale for Hispanics (BASH; Norris et al., 1996);
and questions about
their ACP activities. After being exposed to the intervention, participants responded to a post-test
survey which included a demographic survey. Participants were enrolled between April and
August 2021.
Study Measures
Healthcare Stereotype Threat. We measured healthcare stereotype threat using a four-item
instrument adapted from the Health and Retirement Study (Abdou et al., 2016). Using a Likert
Scale, participants were asked if they strongly disagreed, disagreed, neither agreed or disagreed,
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agreed, or strongly agreed with the following statements: 1) “ When seeking healthcare, I worry
about being judged negatively because of my race or ethnicity;” 2) “When seeking healthcare, I
worry that my medical evaluation may be negatively affected by my race or ethnicity;” 3) “When
seeking healthcare, I worry that my race or ethnicity might affect the recommendations, tests,
and/or diagnoses I receive;” and 4) “When seeking healthcare, I worry that I might confirm
negative stereotypes about people of my race or ethnicity.” A total healthcare stereotype threat
score was calculated by averaging responses to these four items. Scores ranged from 1 (strongly
disagreed) to 5 (strongly agreed) to being personally reduced to group stereotypes by their health
care providers due to their race/ethnicity. This scale and the scoring of the instrument has been
previously used and validated among Hispanics (Abdou et al., 2016).
Level of acculturation. We used a four-item language-based measure of acculturation for
Hispanics, known as the Brief Acculturation Scale for Hispanics or BASH (Norris et al., 1996).
A total score was calculated by averaging responses to the four items. Scores ranged from 1 to 5,
with higher scores denoting higher acculturation. A score equal to or less than 3.0 indicated low
acculturation, while a score greater than 3.0 indicated high acculturation. This scale and scoring
have been previously used and validated among Hispanics (Lutenbacher et al., 2022; Palacios et
al., 2023; Tsui et al., 2022).
Advance Care Planning Activities. Participants also were asked if they had ever 1) “discussed
with anyone the care or medical treatment you would want to receive if you were to become
seriously ill in the future?” (i.e., advance care planning conversation) 2) “provided written
instructions about the care or medical treatment that you want to receive if you cannot make
those decisions yourself?” (i.e., living will or advance directive) or 3) “made any legal
arrangements for a specific person or persons to make decisions about your care or medical
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treatment if you cannot make those decisions yourself?” (i.e., durable power of attorney for
health care). These three questions are part of the Health and Retirement Study’s exit interview
(HRS, 2022)
and have been used to examine ACP activities (Bischoff et al., 2013; Kata et al.,
2020; Portanova et al., 2017).
Demographics. We also collected demographic information including age, gender, marital status,
ethnicity, religious background, education, annual income, work status, country of origin, years
living in the U.S., and patient-reported medical conditions.
Statistical Analysis
Descriptive statistics and bivariate analyses were calculated using STATA version 15.1
(StataCorp, College Station, TX). We used two-sided Fisher’s exact test for all categorical
variables, and Mann-Whitney U Tests (for BASH score and age) and independent group t-test
(for healthcare stereotype threat score and years living in the U.S) for continuous variables.
Significance was set at p<0.05.
Results
Participant Characteristics
All 50 study participants were over the age of 40, with a mean age of 56.74 (SD=12.64; range:
40 to 93 years old). More than half were male (56%). Most (72%) identified as Catholic,
followed by 20% Christian, and 8% stated no religious affiliation. Most (62%) had less than a
high school education and were unemployed (70%). Just over half (60%) reported an annual
income of under $10,000. Most (76%) were born in Mexico. Participants had lived in the US
from six months to 63 years, with a mean of 28.99 years (SD=13.01). Participants had a variety
of medical conditions, including cancer (64%), kidney disease (16%), liver disease (10%), heart
disease (8%), lung disease (8%), diabetes (6%), and hypertension (4%).
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Advance Care Planning Activity Completion
Among the 50 participants, 50% had an advance care planning conversation, 18% stated they had
a living will or advance directive, 32% had a durable power of attorney for health care, and 8%
had completed all three advance care planning activities. There were no statistically significant
differences between those who had an advance care planning conversation and those who did not
across all demographic characteristics. There were no statistically significant differences
between those with and without a living will or advance directive in age, gender, marital status,
religious background, annual income, work status, country of origin, years living in the U.S., and
in several patient-reported medical conditions (heart disease, lung disease, hypertension, liver
disease, and kidney disease). Among those with a living will or advance directive, 78% had a 9
th
grade education or higher compared to 28% of those without a living will or advance directive
(p<0.01). A higher proportion of patients without an AD had cancer (72%) compared to those
with an AD (28%; p= 0.02). See Table 6. There were no statistically significant differences
between those who had a durable power of attorney for health care and those who did not across
all demographic characteristics. See Table 6.
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Healthcare Stereotype Threat
The average healthcare stereotype threat score was 2.78 (SD=0.89) and ranged from 1.0 to 4.50
(possible score range 1.0 - 5.0). Higher score indicates greater perceived threat of being
personally reduced to group stereotypes by the healthcare system. Those who had an ACP
conversation had significantly lower healthcare stereotype threat scores than those who had not
(M=2.51 vs. 3.04; p=0.03). However, there was no statistically significant difference between
those who had a living will or advance directive and those who did not in terms of healthcare
stereotype threat scores (2.30 vs. 2.88, p=0.08). There was also no statistically significant
difference between those who had a durable power of attorney for health care and those who did
not in terms of healthcare stereotype threat scores (2.72 vs. 2.80; p=0.76). See Figure 2.
Figure 2: Healthcare Stereotype Threat Score by Advance Care Planning Activity Completion.
*p<0.05
2.51
2.3
2.72
3.04
2.88
2.8
0
0.5
1
1.5
2
2.5
3
3.5
ACP Conversations* Advance Directive Durable Power of
Attorney
Average Healthcare Stereotype Threat Score
Yes No
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Language Acculturation
Overall, participants had a mean BASH score of 1.47 (SD=0.66), ranging from 1 to 3.25
(possible score range 1.0 – 5.0). The higher the BASH score the more acculturated participants
are (i.e., those who have adopted more of the cultural norms, values, beliefs, and practices of the
American culture in which they live). With scores of 3.0 or less indicative of low acculturation,
all participants except one (98%) had low BASH scores. In addition, 50% of participants had a
score of one, the lowest possible language acculturation score.
Findings from a Mann-Whitney U test indicated those with a living will or advance had
significantly greater acculturation scores (1.92 vs 1.30 z=-2.207, p=0.03). There were no
significant differences in acculturation scores between those with or without an advance care
planning conversation (1.51 vs. 1.42; z=-0.828, p=0.41) and those with and without a durable
power of attorney for health care (1.38 vs. 1.52; z=-0.31, p=0.76). See Figure 3.
Figure 3: Language Acculturation by Advance Care Planning Activity Completion
1.51
1.92
1.38
1.42
1.3
1.52
0
0.5
1
1.5
2
2.5
Advance Care Planning
Conversations
Advance Directive or
Living Will *
Durable Power of
Attorney
Average Language Acculturation Score
Yes No
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*p<0.05
Discussion
To our knowledge, our study is the first to explore how healthcare stereotype threat influences
advance care planning and healthcare outcomes among Hispanics. Although previous studies
have examined stereotype threat in the academic setting among Hispanics (Gonzales et al., 2022;
Walton & Spencer, 2009), none have explored stereotype threat in the healthcare setting. Our
findings suggest that factors such as healthcare stereotype threat and acculturation levels can
influence advance care planning conversations and the development of advance directives.
Although we recruited patients with chronic life-limiting illnesses, just half of the participants
had participated in an advance care planning conversation, few (18%) had completed an advance
directive, and about a third (32%) had identified a healthcare proxy.
We found that hospitalized Hispanic patients who had advance care planning conversations had
significantly lower healthcare stereotype threat scores, indicating reduced threat of being
personally reduced to group stereotypes by the healthcare system, than those who had not had
advance care planning conversations. However, healthcare stereotype threat scores did not
influence the appointment of durable power of attorney for health care. On the contrary, a recent
study examining Black-White differences in factors associated with advance care planning found
that healthcare stereotype threat positively predicted the appointment of a durable power of
attorney for health care (Fennell et al., 2023). It is important to note that our study recruited
patients from a hospital setting, which means that their advance care planning engagement may
have been influenced by their contact with medical providers. Studying advance care planning
and advance directive completion among patients in the hospital setting is valuable, as these
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patients are more likely to have serious illness that makes advance care planning particularly
important.
Similar to previous findings, our study found that those who had a living will or advance
directive had greater acculturation scores. In a telephone survey, Latinos with stronger
affiliations with traditional cultural beliefs were less likely to have heard of or complete an
advance directive (Wittenberg-Lyles et al., 2008). Among Asian Americans, those with higher
levels of acculturation also were more likely to complete advance directives (Jang et al., 2017).
Along with greater acculturation levels, education, and preference for greater autonomy have
also been associated with having an advance directive among Hispanics (Kelley et al., 2010). In
our study, acculturation levels did not influence advance care planning conversations or the
appointment of a durable power of attorney for health care. To note, healthcare stereotype threat
and acculturation were not significantly correlated.
Strengths and weaknesses: This study is the first to suggest healthcare stereotype threat can
influence advance care planning among Hispanics and it adds to the evidence that acculturation
levels impact advance care planning (Kelley et al., 2010; Wittenberg-Lyles et al., 2008).
This
study has limitations. First, it was conducted among Spanish speaking hospitalized patients
within one medical center and is not intended to be generalized to other populations. Second, this
study did not collect information on advance directive development date. Understanding when
advance directives were developed could shed light on the impact of acculturation. Third, our
measure of acculturation, the BASH, primarily focuses on language use. While this may be
suitable for Spanish-speaking participants, it is worth noting that acculturation is a multifaceted
process that extends beyond language. Therefore, other measures might be more comprehensive
at capturing acculturations impact on ACP. Lastly, findings explore the influences of healthcare
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stereotype threat and acculturation on advance care planning among a sample of 50 patients. This
pilot study lacked sufficient sample size needed to conduct a multivariate model. Future, larger
studies are needed using multivariate statistical models to better understand the relationship
between healthcare stereotype threat and advance care planning.
Conclusion
Given the increasing global population of immigrants, our findings have important implications
for understanding and addressing barriers to advance care planning engagement among diverse
immigrant populations. Future research should explore healthcare stereotype threat and language
acculturation’s impact on advance care planning in other countries and immigrant populations.
Our findings also highlight the need for healthcare providers and policymakers to prioritize
efforts to reduce healthcare stereotype threat and improve language acculturation among
Hispanic patients with chronic life- limiting illnesses. Future research should investigate ways to
improve the role of cultural sensitivity in broaching discussions of future medical treatment
among seriously ill patients. Additionally, efforts to increase access to interpreters, and language
services in healthcare settings could help to address acculturation barriers and improve
communication between patients and providers. These policy implications underscore the
importance of addressing structural and systematic factors that contribute to disparities in
advance care planning engagement among diverse populations.
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CHAPTER V: DISCUSSION
This dissertation explored the end-of-life experiences of Hispanics in the United States,
by employing qualitative and quantitative methods. Each chapter focused on a different element
of end-of-life care among Hispanics, including hospice use, hospital-based palliative care, and
advance care planning. Chapter II provided a comprehensive review of the hospice extant
hospice literature by synthesizing findings on Hispanics’ hospice knowledge and awareness,
attitudes towards hospice, barriers to and facilitators of hospice use, and outcomes of hospice
care. Chapter III investigated the challenges and facilitators palliative care providers experience
in caring for undocumented immigrants. And finally, Chapter IV explored the relationship
between healthcare stereotype threat and language acculturation in advance care planning.
Combined, these studies provide valuable insights into the challenges and facilitators of end-of-
life care and highlight the need for more culturally competent healthcare.
Despite the increasing prevalence of Hispanics in the United States, relatively little
research on end-of-life care and serious illness have focused on this population. This
underrepresentation in end-of-life care research is concerning given the unique social
determinants of health that impact the experiences and needs of Hispanics. Previous studies have
often focused on comparisons between Hispanics and Whites, limiting our understanding of the
challenges and facilitators faced by Hispanics in accessing and utilizing hospice and palliative
care services. Furthermore, there is a lack of in-depth research on factors such as healthcare
stereotype threat, language acculturation, and the challenges faced by undocumented immigrants,
which may significantly influence the end-of-life experiences for Hispanics. To address these
disparities in hospice and palliative care, it is important to increase the inclusion of Hispanics in
end-of-life care research and develop targeted interventions that address their needs.
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The findings from this dissertation aim to bridge this knowledge gap by illuminating (1) a
foundation for hospice research on Hispanics, (2) exploring palliative care healthcare providers’
perspectives on the challenges and facilitators they experience in providing care to seriously ill
undocumented Hispanic immigrants, and (3) exploring how healthcare stereotype threat can
affect advance care planning among Hispanics, while taking language acculturation into
consideration. This dissertation also provides a roadmap for future research by (1) outlining
extant hospice research and identifying remaining gaps, (2) calling for research involving the
perspectives of undocumented immigrants, and (3) demonstrating the need for larger studies
using multivariate statistical models to better understand the relationship between healthcare
stereotype threat and advance care planning.
Additionally, this dissertation offers compelling information for insurance companies,
medical groups, and health plans. By providing culturally competent care, these care
organizations can improve patient satisfaction and outcomes by addressing specific needs that
might otherwise go unmet. This could potentially lead to reduced healthcare costs by avoiding
complications and hospital readmissions often associated with poor end-of-life care (Weech-
Maldonado et al., 2013). It is crucial to develop targeted culturally competent interventions that
address Hispanics’ unique needs to make end-of-life care more effective, resulting in better
patient experiences and outcomes. To ensure that these interventions are culturally sensitive and
address both community and patients’ needs, utilizing community participatory research is
important. This approach increases the likelihood of the interventions’ efficacy by involving the
community in the research process, and potentially ensuring that the interventions are effective.
In the existing research on end-of-life care and serious illness among Hispanics, studies
often include small sample sizes, limiting the generalizability and applicability of the findings. In
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addition, few studies have examined the variation in end-of-life care outcomes among subgroups
of Hispanics, such as differences between Mexicans, Puerto Ricans, Cubans, and other Hispanic
origins. The Hispanic population is diverse, with people of various countries and cultural
backgrounds -- and understanding subgroup differences in regard to hospice, palliative care, and
advance care planning can help better tailor interventions and strategies to address disparities in
care. Previous research has demonstrated the importance of examining different Hispanic
subgroups, observing variety of levels of cancer mortality (Zamora et al., 2019), psychological
distress (Lucas et al., 2016), and biological risk (Garcia & Ailshire, 2019) across Hispanic
groups. Chapter II found that nearly all studies in the review grouped Hispanic nationalities
together. However, the two studies that looked at specific Hispanic nationalities found varying
differences in hospice outcomes (Colón, 2012; Park et al., 2016), demonstrating the importance
to explore various groups to get a comprehensive understanding of the unique needs and
challenges faced by diverse Hispanic communities in accessing and utilizing hospice. In Chapter
III, one provider spoke about challenges that come with caring for this diverse group of people
and even using a Spanish translator may be insufficient in meeting the needs of Hispanic
undocumented patients. This provider noted that Hispanic patients often “speak a dialect for
which I can't get an interpreter most of the time.” Chapter IV highlights the importance of
considering variation in acculturation (Colón, 2012) in end-of-life decision-making among
Hispanics. Future studies are needed to explore how experiences of healthcare stereotype threat
might differ among Hispanics from various cultural subgroups and among different levels of
acculturation to better understand potential biases held by healthcare providers among specific
subgroups. Additionally, research has largely neglected the experiences of undocumented
Hispanics, a particularly vulnerable population that faces unique challenges such as fear of
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deportation, limited access to healthcare services, and restrictive work obligations (Hacker et al.,
2015). To address these disparities in hospice and palliative care for this growing population,
future research should prioritize larger sample sizes, explore variation among Hispanic
subgroups, and investigate the multitude of challenges encountered by undocumented Hispanics
at the end of life.
There also is a significant deficit in end-of-life intervention research for Hispanics, as
most studies focus on examining the disparities in hospice and palliative care access and
utilization among Hispanics. While these studies provide valuable insights into the disparities
and challenges faced by Hispanics at the end of life, there has been a lack of research that
focuses on developing and testing culturally competent interventions that bridge gaps in
addressing these identified problems. During the systematic literature review, we found just one
intervention addressing hospice use among Hispanics, that RCT found no difference in use
(Fischer et al., 2018). While there have been other culturally tailored interventions aiming to
address disparities in end of life among Hispanics, most existing interventions have been
feasibility studies, demonstrating readiness for effectiveness training but not directly examining
the outcomes of the intervention (Bekelman et al., 2020; Goebel et al., 2021). Researchers should
focus on developing interventions to address these disparities, and extend beyond feasibility
testing to ensure effective interventions are widely used to improve the quality of life of Hispanic
patients.
On another note, the preliminary findings of the pilot study in Chapter III suggest that
Hispanics’’ experiences of healthcare interactions may play a significant role in their
engagement in advance care planning. These interactions, which can be influenced by factors
such as healthcare stereotype threat, language barriers, and cultural differences, may either
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encourage or hinder ACP engagement among Hispanics. Positive healthcare interactions that
demonstrate cultural competence and effective communication can help build trust between
patients and providers (Ladha et al., 2018), potentially fostering an environment conducive to
ACP discussions among Hispanics. On the contrary, negative experiences with healthcare
providers may lead to decreased trust and reluctance to engage in ACP conversations.
Developing trust and rapport between healthcare providers and Hispanics is crucial. Cultural
competence training for healthcare providers can facilitate better communication and increase
patient trust (Weech-Maldonado et al., 2012). This pilot study highlights the importance of
understanding how healthcare experiences among Hispanics can impact their ACP engagement.
In addition, future research should build on these findings to develop interventions and strategies
that address their challenges, with the goal of promoting ACP engagement in ACP discussions.
This dissertation iterates the need for policy makers to address end-of-life care disparities
among Hispanics as a whole. Throughout the chapters, significant disparities in hospice care,
palliative care, and advance care planning among Hispanics were demonstrated. Chapter II
highlighted several significant disparities in hospice knowledge and awareness, utilization, and
outcomes among Hispanics in the United States. Even in the time period since the completion of
this chapter, disparities in hospice care persist. Recent studies have shown a lack of hospice care
awareness among Hispanics (Bazargan et al., 2021), lower odds of receiving a hospice referral
(Nicholson et al., 2022); lower rates of hospice enrollment (Elting et al., 2020; Jones et al., 2021;
Lin et al., 2022; Wan et al., 2022), and shorter hospice length of stays (Lin et al., 2022)
compared to Whites. A recent report from Home Healthcare Now found that for every increase
in the number of Hispanic residents in a hospice area, the chances of offering home-based
hospice care decreased slightly (Osakwe, 2021). By synthesizing these findings, this dissertation
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underscores the need for policies to address and help mitigate end-of-life care disparities among
this diverse population.
In attempts to address such disparities, beginning May 1, 2022, California expanded its
Medi-Cal program to start providing healthcare access to those who are 50 and older, who were
previously ineligible for federally funded full scope Medi-Cal due to their immigration status.
California is the first state to extend Medi-Cal/Medicaid to their undocumented population.
However, palliative care providers working in safety-net hospitals who were interviewed as part
of the study in Chapter II said they had not yet seen the expansion in effect. This expansion is
expected to provide care to approximately 235,000 low-income undocumented Californians aged
50 and older (California Governor’s Office, 2022). However, even with this expansion, about 3.2
million people in California remain uninsured, including 1.16 million undocumented immigrants
(Ibarra, 2022). By January 1, 2024, California plans to expand Medi-Cal coverage to include
those between the ages of 26 and 46. Policymakers must address the barriers that prevent
undocumented immigrants from accessing care in a timely manner. As noted in Chapter II,
undocumented immigrants' delay in care results in untreated and advanced health conditions that
require palliative care providers to focus on managing immediate symptoms and having end-of-
life conversations sooner than necessary.
Policy makers also should take note of the impact healthcare stereotype threat can have
on advance care planning. To effectively mitigate this issue, policy makers should implement
strategies that promote culturally sensitive care to Hispanic patients. This can include requiring
cultural competency training for healthcare providers, encouraging healthcare organizations to
adopt diversity and inclusion policies, supporting the use of interpreter services, and setting up
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protocols to address healthcare stereotype threat. These different approaches can help ensure that
this growing and diverse population can receive access to quality end-of-life care services.
CONCLUSION
In conclusion, this dissertation has shed light on significant disparities in use of hospice
and palliative care, advance care planning, and research among seriously ill Hispanics. The
findings from this research underscore the need for targeted interventions, culturally competent
care, and policy initiatives to address these disparities and improve the end-of-life experiences of
Hispanics. As the Hispanic population continues to grow, so does the importance of ensuring
access to quality hospice and palliative care services for Hispanics. This dissertation may guide
future research to improve the quality of care for seriously ill Hispanics.
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BIBLIOGRAPHY
AARP. (2019). Latinos' Hospice Use Is Growing. Accessed March 19, 2023.
https://www.aarp.org/caregiving/health/info-2019/latinos-hospice-use-growing.html
Abdou, C. M., Fingerhut, A. W., Jackson, J. S., & Wheaton, F. (2016). Healthcare stereotype
threat in older adults in the health and retirement study. American Journal of Preventive
Medicine, 50(2), 191-198.
Adams, C. E., Bader, J., Horn, K. V., & Hernandez, I. (2008). The association among primary
caregiver and hospice services for Mexican Americans and Anglos. Journal of Hospice
and Palliative Nursing, 10(1), 17-25.
Adams, C. E., Horn, K., & Bader, J. (2006). Hispanic access to hospice services in a
predominantly Hispanic community. American Journal of Hospice and Palliative Care,
23(1), 9-16.
Adams, C. E., Horn, K., & Bader, J. (2007). Hispanics' experiences in the health system prior to
hospice admission. Journal of Cultural Diversity, 14(4),155-163.
Akresh, I.R. (2009). Health Service Utilization among Immigrants to the United States.
Population Research and Policy Review, 28(6), 795–815.
Al Hadidi, S., Dongarwar, D., Salihu, H. M., Kamble, R. T., Lulla, P., Hill, L. C., ... & Usmani,
S. Z. (2021). Health disparities experienced by Black and Hispanic Americans with
multiple myeloma in the United States: a population-based study. Leukemia &
lymphoma, 62(13), 3256-3263.
Alesi Perez, C., Cellar Mejia, M., & Johnson, H. (2023). Immigrants in California. Public Policy
Institute of California. Retrieved March 4, 2023, from
https://www.ppic.org/publication/immigrants-in-california/
Ali, H., Pamarthy, R., Bolick, N. L., Leland, W., & Lee, T. (2022, November). Inpatient
outcomes and racial disparities of palliative care consults in mechanically ventilated
patients in the United States. In Baylor University Medical Center Proceedings (Vol. 35,
No. 6, pp. 762-767). Taylor & Francis.
Alterio, R. E., Ju, M. R., Wang, S. C., Mansour, J. C., Yopp, A., & Porembka, M. R. (2021).
Socioeconomic and racial/ethnic disparities in receipt of palliative care among patients
with metastatic hepatocellular carcinoma. Journal of Surgical Oncology, 124(8), 1365-
1372.
Anagnostou D. (2017). Palliative care improves quality of life and reduces symptom burden in
adults with life-limiting illness. Evidence-based nursing, 20(2), 47–48.
https://doi.org/10.1136/eb-2016-102603
Andersen, R. (1968). A behavioral model of families' use of health services. A behavioral model
of families' use of health services, (25).
Copyright 2023 83
Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care: does it
matter? Journal of Health and Social Behavior, 1-10.
Arriaza, P., Martin, S. S., & Csikai, E. L. (2011). An assessment of hospice bereavement
programs for Hispanics. Journal of social work in end-of-life & palliative care, 7(2-3),
121–138.
Aronson, J., Burgess, D., Phelan, S. M., & Juarez, L. (2013). Unhealthy interactions: The role of
stereotype threat in health disparities. American Journal of Public Health, 103(1), 50-56.
Bajaj, S. S., Jain, B., Potter, A. L., Dee, E. C., & Yang, C. F. J. (2023). Racial and ethnic
disparities in end-of-life care for patients with esophageal cancer: Death trends over
time. The Lancet Regional Health-Americas, 17, 100401.
Barnato, A. E., Anthony, D. L., Skinner, J., Gallagher, P. M., & Fisher, E. S. (2009). Racial and
ethnic differences in preferences for end-of-life treatment. Journal of general internal
medicine, 24, 695-701.
Bazargan, M., Cobb, S., Assari, S., & Kibe, L. W. (2021). Awareness of palliative care, hospice
care, and advance directives in a racially and ethnically diverse sample of California
adults. American Journal of Hospice and Palliative Medicine®, 38(6), 601-609.
Beck, T. L., Le, T. K., Henry-Okafor, Q., & Shah, M. K. (2017). Medical care for undocumented
immigrants: national and international issues. Primary Care: Clinics in Office Practice,
44(1), e1-e3.
Bekelman, D. B., Fink, R. M., Sannes, T., Kline, D. M., Borrayo, E. A., Turvey, C., & Fischer,
S. M. (2020). Puente para cuidar (bridge to caring): A palliative care patient navigator
and counseling intervention to improve distress in Latino/as with advanced
cancer. Psycho-oncology, 29(4), 688–695. https://doi.org/10.1002/pon.5313
Beltran, S. J. (2018). Hispanic Hospice Patients' Experiences of End-Stage Restlessness. Journal
of Social Work in End-of-Life & Palliative Care, 14(1),93-109.
Bhatnagar, M., & Lagnese, K. R. (2021). Hospice Care. In StatPearls [Internet]. Treasure Island
(FL): StatPearls Publishing.
Bischoff, K. E., Sudore, R., Miao, Y., Boscardin, W. J., & Smith, A. K. (2013). Advance care
planning and the quality of end-of-life care in older adults. Journal of the American
Geriatrics Society, 61(2), 209-214.
Biswas, D., Kristiansen, M., Krasnik, A., & Norredam, M. (2011). Access to healthcare and
alternative health-seeking strategies among undocumented migrants in Denmark. BMC
Public Health, 11(1), 1-1.
Blackhall, L. J., Frank, G., Murphy, S. T., Michel, V., Palmer, J.M., & Azen, S. P. (1999).
Ethnicity and attitudes towards life sustaining technology. Social Science & Medicine,
48, 1779-1789.
Bradley, E. H., Prigerson, H., Carlson, M. D., Cherlin, E., Johnson-Hurzeler, R., & Kasl, S. V.
(2004). Depression among surviving caregivers: does length of hospice enrollment
matter? American Journal of Psychiatry, 161(12), 2257-2262.
Copyright 2023 84
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in
Psychology, 3(2), 77-101.
Bree, R. T., & Gallagher, G. (2016). Using Microsoft Excel to code and thematically analyse
qualitative data: a simple, cost-effective approach. All Ireland Journal of Higher
Education, 8(2).
Brumley, R., Enguidanos, S., Jamison, P., Seitz, R., Morgenstern, N., Saito, S., McIlwane, J.,
Hillary, K., & Gonzalez, J. (2007). Increased satisfaction with care and lower costs:
results of a randomized trial of in-home palliative care. Journal of the American
Geriatrics Society, 55(7), 993–1000.
Burghout, C., Nahar-van Venrooij, L. M., Bolt, S. R., Smilde, T. J., & Wouters, E. J. (2023).
Benefits of structured advance care plan in end-of-life care planning among older
oncology patients: a retrospective pilot study. Journal of Palliative Care, 38(1), 30-40.
Cagle, J. G., Van Dussen, D. J., Culler, K. L., Carrion, I., Hong, S., Guralnik, J., & Zimmerman,
S. (2016). Knowledge About Hospice: Exploring Misconceptions, Attitudes, and
Preferences for Care. The American Journal of Hospice & Palliative Care, 33(1), 27-33.
California Governor's Office. (2022). MediCal Expansion Provided 286,000 Undocumented
Californians with Comprehensive Health Care. Retrieved March 19, 2023, from
https://www.gov.ca.gov/2022/10/19/medi-cal-expansion-provided-286000-
undocumented-californians-with-comprehensive-health-care/
Campbell, R. M., Klei, A. G., Hodges, B. D., Fisman, D., & Kitto, S. (2014). A comparison of
health access between permanent residents, undocumented immigrants, and refugee
claimants in Toronto, Canada Journal of Immigrant and Minority Health, 16, 165-176.
Capps, Randy, Michael Fix, Jennifer Van Hook, and James D. Bachmeier. 2013. “A
Demographic, Socioeconomic, and Health Coverage Profile of Unauthorized Immigrants
in the United States.” Migration Policy Institute.
Cardenas, V., Rahman, A., Zhu, Y., & Enguidanos, S. (2022). Reluctance to accept palliative
care and recommendations for improvement: Findings from semi-structured interviews
with patients and caregivers. American Journal of Hospice and Palliative Medicine®,
39(2), 189-195.
Carr, D. (2011). Racial differences in end-of-life planning: why don't Blacks and Latinos prepare
for the inevitable? OMEGA-Journal of Death and Dying, 63(1), 1-20.
Carr, D. (2012). Racial and ethnic differences in advance care planning: Identifying subgroup
patterns and obstacles. Journal of Aging and Health, 24(6), 923-47.
Carrion, I. V., Cagle, J. G., Van Dussen, D. J., Culler, K. L., & Hong, S. (2015). Knowledge
about hospice care and beliefs about pain management: exploring differences between
Hispanics and non-Hispanics. American Journal of Hospice and Palliative
Medicine®, 32(6), 647-653.
Copyright 2023 85
Cea, M. E., Reid, M. C., Inturrisi, C., Witkin, L. R., & Prigerson, H. G. (2016). Pain Assessment,
Management, and Control Among Patients 65 Years or Older Receiving Hospice Care in
the U.S. Journal of Pain and Symptom Management, 52(5), 663-672.
Centers for Disease Control and Prevention. (2015). Hispanic Health. Retrieved March 19, 2023,
from https://www.cdc.gov/vitalsigns/hispanic-health/index.html
Centers for Medicare & Medicaid Services. (2021). Transitions from Hospice care, Followed by
Death or Acute Care. Retrieved from https://www.cms.gov/Medicare/Quality-Initiatives-
Patient-Assessment-Instruments/MMS/Downloads/Development-of-Draft-HQRP-
Transitions-Measure-Specifications.pdf
Cervantes, L., Jones, J., Linas, S., Fischer, S., & Cervantes, L. (2017). Qualitative Interviews
Exploring Palliative Care Perspectives of Latinos on Dialysis. Clinical Journal of the
American Society of Nephrology: CJASN, 12(5), 788–798.
Chen, Y., Criss, S. D., Watson, T. R., Eckel, A., Palazzo, L., Tramontano, A. C., ... & Kong, C.
Y. (2020). Cost and utilization of lung cancer end‐of‐life care among racial‐ethnic
minority groups in the United States. The Oncologist, 25(1), e120-e129.
Choi, J. (2009). Contextual effects on health care access among immigrants: Lessons from three
ethnic communities in Hawaii. Social Science & Medicine (1982), 69(8), 1261–1271.
Choi, S., McDonough, I. M., Kim, M., & Kim, G. (2020). The association between the number
of chronic health conditions and advance care planning varies by race/ethnicity. Aging &
mental health, 24(3), 453-63.
Chong, K., Silver, S. A., Long, J., Zheng, Y., Pankratz, V. S., Unruh, M. L., & Chertow, G. M.
(2017). Infrequent Provision of Palliative Care to Patients with Dialysis-Requiring
AKI. Clinical journal of the American Society of Nephrology: CJASN, 12(11), 1744–
1752.
Chung, K., Augustin, F., & Esparza, S. (2017). Development of a Spanish-Language Hospice
Video. American Journal of Hospice and Palliative Medicine, 34(8), 737-743.
Ciemins, E. L., Stuart, B., Gerber, R., Newman, J., & Bauman, M. (2006). An Evaluation of the
Advanced Illness Management (AIM) Program: Increasing hospice utilization in the San
Francisco Bay area. Journal of palliative medicine, 9(6), 1401–1411.
Cohen, L. L. (2008). Racial/ethnic disparities in hospice care: a systematic review. Journal of
Palliative Medicine, 11(5), 763-768.
Colón, M. (2005). Hospice and Latinos: a review of the literature. Journal of Social Work in
End-of-Life & Palliative Care, 1(2), 27-43.
Colón, M. (2012). Acculturation and attitudes of Latinos toward hospice. Journal of Social Work
in End-of-Life & Palliative Care, 8(3), 229-248.
Colón, M., & Lyke, J. (2015). Comparison of hospice use by European Americans, African
Americans, and Latinos: a follow-up study. American Journal of Hospice and Palliative
Care, 32(2), 205-209.
Copyright 2023 86
Connolly, A., Sampson, E. L., & Purandare, N. (2012). End-of-Life Care for People with
Dementia from Ethnic Minority Groups: A Systematic Review. Journal of the American
Geriatrics Society (JAGS), 60(2), 351-360.
Covidence. (n.d.). Better systematic review management. Accessed on January 6, 2022.
https://www.covidence.org
Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010). The impact of advance
care planning on end of life care in elderly patients: randomised controlled trial. BMJ,
340.
Dhiliwal, S. R., & Muckaden, M. (2015). Impact of specialist home-based palliative care
services in a tertiary oncology set up: a prospective non-randomized observational study.
Indian Journal of Palliative Care, 21(1),28.
Duffy, S. A., Jackson, F. C., Schim, S. M., Ronis, D. L., & Fowler, K. E. (2006). Racial/ethnic
preferences, sex preferences, and perceived discrimination related to end‐of‐life
care. Journal of the American Geriatrics Society, 54(1), 150-157.
Elting, L. S., Liao, K. P., Giordano, S. H., & Guadagnolo, B. A. (2020). Hospice enrollment
among cancer patients in Texas covered by Medicare managed care and traditional fee-
for-service plans: a statewide population-based study. Supportive Care in Cancer, 28,
3351-3359.
Enguidanos, S., Cardenas, V., Wenceslao, M., Hoe, D., Mejia, K., Lomeli, S., & Rahman, A.
(2021). Health care provider barriers to patient referral to palliative care. American
Journal of Hospice and Palliative Medicine®, 38(9), 1112-1119.
Enguidanos, S., Storms, A. D., Lomeli, S., & van Zyl, C. (2022). Improving palliative care
knowledge among hospitalized Hispanic patients: A pilot study. Journal of Palliative
Medicine, 25(8), 1179-1185.
Estrada, L. V., Agarwal, M., & Stone, P. W. (2021). Racial/ethnic disparities in nursing home
end-of-life care: a systematic review. Journal of the American Medical Directors
Association, 22(2), 279-290.
Eversley, R., Estrin, D., Dibble, S., & Wardlaw, L. (2005, March). Post-treatment symptoms
among ethnic minority breast cancer survivors. In Oncology nursing forum (Vol. 32, No.
2, p. 250). Oncology Nursing Society.
Fennell, G., Hoe, D., Zelinski, E., & Enguídanos, S. (2023). Factors associated with advance care
planning by race. American Journal of Hospice and Palliative Medicine®, 40(2), 164-72.
Fischer, S., Cervantes, L., Fink, R., & Kutner, J. (2015). Apoyo con Carino: A Pilot Randomized
Controlled Trial of a Patient Navigator Intervention to Improve Palliative Care Outcomes
for Latinos with Serious Illness. Journal of Pain and Symptom Management, 49(4), 657–
665.
Copyright 2023 87
Fischer, S. M., Kline, D. M., Min, S. J., Okuyama-Sasaki, S., & Fink, R. M. (2018). Effect of
Apoyo con Cariño (Support With Caring) Trial of a Patient Navigator Intervention to
Improve Palliative Care Outcomes for Latino Adults With Advanced Cancer: A
Randomized Clinical Trial. JAMA Oncology, 4(12),1736-1741.
Fischer, S., Sauaia, A., Kutner, J., & Fischer, S. (2007). Patient navigation: a culturally
competent strategy to address disparities in palliative care. Journal of Palliative Medicine,
10(5), 1023–1028. https://doi.org/10.1089/jpm.2007.0070
Fischer, S. M., Sauaia, A., Min, S. J., & Kutner, J. (2012). Advance directive discussions: lost in
translation or lost opportunities? Journal of palliative medicine, 15(1), 86–92.
Flory, J., Yinong, Y. X., Gurol, I., Levinsky, N., Ash, A., & Emanuel, E. (2004). Place of death:
U.S. trends since 1980. Health affairs (Project Hope), 23(3), 194–200.
Forst, D., Adams, E., Nipp, R., Martin, A., El-Jawahri, A., Aizer, A., & Jordan, J. T. (2018).
Hospice utilization in patients with malignant gliomas. Neuro-oncology, 20(4), 538–545.
https://doi.org/10.1093/neuonc/nox196
Fosler, L., Staffileno, B. A., Fogg, L., & O'Mahony, S. (2015). Cultural differences in discussion
of do-not-resuscitate status and hospice. Journal of Hospice and Palliative Nursing, 17(2),
128-132.
Frahm, K. A., Brown, L. M., & Hyer, K. (2012). Racial Disparities in End-of-Life Planning and
Services for Deceased Nursing Home Residents. Journal of the American Medical
Directors Association, 13(9), 819.7-819.11.
Frahm, K. A., Brown, L. M., & Hyer, K. (2015). Racial disparities in receipt of hospice services
among nursing home residents. The American journal of hospice & palliative care, 32(2),
233–237.
Gade, G., Venohr, I., Conner, D., McGrady, K., Beane, J., Richardson, R. H., Williams, M. P.,
Liberson, M., Blum, M., & Della Penna, R. (2008). Impact of an inpatient palliative care
team: a randomized control trial. Journal of palliative medicine, 11(2), 180–190.
García, C., & Ailshire, J. A. (2019). Biological Risk Profiles Among Latino Subgroups in the
Health and Retirement Study. Innovation in aging, 3(2), igz017.
https://doi.org/10.1093/geroni/igz017
Garcini, L. M., Domenech Rodríguez, M. M., Mercado, A., & Paris, M. (2020). A tale of two
crises: The compounded effect of COVID-19 and anti-immigration policy in the United
States. Psychological Trauma: Theory, Research, Practice, and Policy, 12(1), S230.
Garrido, M. M., Harrington, S. T., & Prigerson, H. G. (2014). End‐of‐life treatment preferences:
A key to reducing ethnic/racial disparities in advance care planning? Cancer, 120(24),
3981-3986.
Gaudio, F., Hichenberg, S., Eisenberg, M., Kerr, E., Zaider, T., & Kissane, D. (2013). Latino
Values in the Context of Palliative Care: Illustrative Cases From the Family Focused
Grief Therapy Trial. American Journal of Hospice and Palliative Medicine®, 30(3), 271–
278.
Giedzinska, A. S., Meyerowitz, B. E., Ganz, P. A., & Rowland, J. H. (2004). Health-related
quality of life in a multiethnic sample of breast cancer survivors. Annals of behavioral
medicine, 28(1), 39-51.
Copyright 2023 88
Givens, J. L., Tjia, J., Zhou, C., Emanuel, E., & Ash, A. S. (2010). Racial and ethnic differences
in hospice use among patients with heart failure. Archives of Internal Medicine, 170(5),
427-432.
Goebel, J. R., Bird, M. N., & Martinez, I. L. (2021). Empowering the Latino Community Related
to Palliative Care and Chronic Disease Management through Promotores de
Salud(Community Health Workers). Journal of palliative medicine, 24(3), 423–427.
https://doi.org/10.1089/jpm.2020.0332
Gomes, B., Calanzani, N., Curiale, V., McCrone, P., & Higginson, I. J. (2013). Effectiveness and
cost-effectiveness of home palliative care services for adults with advanced illness and
their caregivers. The Cochrane database of systematic reviews, (6), CD007760.
Gonzales, P. M., Blanton, H., & Williams, K. J. (2002). The effects of stereotype threat and
double-minority status on the test performance of Latino women. Personality and Social
Psychology Bulletin, 28(5), 659-70.
Gonzalez, E., & Martin, M. (2011). Cultural Competency in Hospice Care: Exploring the
Hispanic Experience. Journal of Hospice and Palliative Nursing, 13(4), 258-264.
Gozalo, P., Teno, J. M., Mitchell, S. L., Skinner, J., Bynum, J., Tyler, D., & Mor, V. (2011).
End-of-life transitions among nursing home residents with cognitive issues. New England
Journal of Medicine, 365(13), 1212-1221.
Gramling, R., Gajary-Coots, E., Cimino, J., Fiscella, K., Epstein, R., Ladwig, S., ... & Norton, S.
A. (2019). Palliative care clinician overestimation of survival in advanced cancer:
disparities and association with end-of-life care. Journal of pain and symptom
management, 57(2), 233-240.
Gray, N. A., Boucher, N. A., Kuchibhatla, M., & Johnson, K. S. (2017). Hospice access for
undocumented immigrants. JAMA Internal Medicine, 177(4), 579-580.
Gruneir, A., Mor, V., Weitzen, S., Truchil, R., Teno, J., & Roy, J. (2007). Where people die: a
multilevel approach to understanding influences on site of death in America. Medical
care research and review : MCRR, 64(4), 351–378.
Haas, J. S., Earle, C. C., Orav, J. E., Brawarsky, P., Neville, B. A., Acevedo-Garcia, D., &
Williams, D. R. (2007). Lower use of hospice by cancer patients who live in minority
versus white areas. Journal of General Internal Medicine, 22, 396-399.
Hacker, K., Anies, M., Folb, B. L., & Zallman, L. (2015). Barriers to health care for
undocumented immigrants: a literature review. Risk Management and Healthcare Policy,
175-183.
Haines, K. L., Jung, H. S., Zens, T., Turner, S., Warner-Hillard, C., & Agarwal,S. (2018).
Barriers to Hospice Care in Trauma Patients: The Disparities in End-of-Life Care.
American Journal of Hospice and Palliative Care, 35(8),1081-1084.
Hanchate, A., Kronman, A. C., Young-Xu, Y., Ash, A. S., & Emanuel, E. (2009). Racial and
ethnic differences in end-of-life costs: why do minorities cost more than
whites?. Archives of internal medicine, 169(5), 493–501.
Copyright 2023 89
Hardy, D., Chan, W., Liu, C. C., Cormier, J. N., Xia, R., Bruera, E., & Du, X. L. (2011). Racial
disparities in the use of hospice services according to geographic residence and
socioeconomic status in an elderly cohort with nonsmall cell lung cancer. Cancer, 117(7),
1506-1515.
Hardy, D., Chan, W., Liu, C. C., Cormier, J. N., Xia, R., Bruera, E., & Du, X. L. (2012). Racial
disparities in length of stay in hospice care by tumor stage in a large elderly cohort with
non-small cell lung cancer. Palliative Medicine, 26(1), 61-71.
Harrison, K. L., Adrion, E. R., Ritchie, C. S., Sudore, R. L., & Smith, A. K. (2016). Low
completion and disparities in advance care planning activities among older Medicare
beneficiaries. JAMA internal medicine, 176(12),1872-5.
Hawker, S., Payne, S., Kerr, C., Hardey, M., & Powell, J. (2002). Appraising the Evidence:
Reviewing Disparate Data Systematically. Qualitative Health Research, 12(9), 1284-
1299.
Hayes, J., & Hill, L. (2017). Undocumented Immigrants in California. Public Policy Institute of
California. Retrieved March 4, 2023, from
https://www.ppic.org/publication/undocumented-immigrants-in- california/
Health and Retirement Study. (2022). Ann Arbor, MI: University of Michigan.
Hernandez, A., & Rue, T. (2017). Hospice use among Hispanic and non-Hispanic White Cancer
decedents. Health and Social Work, 42(2), 109-116.
Holland, J. M., Thompson, K. L., Rozalski, V., & Lichtenthal, W. G. (2014). Bereavement-
related regret trajectories among widowed older adults. Journals of Gerontology Series
B: Psychological Sciences and Social Sciences, 69(1), 40-47.
Holley, A. P., Gorawara-Bhat, R., Dale, W., Hemmerich, J., & Cox-Hayley, D. (2009). Palliative
Access Through Care at Home: experiences with an urban, geriatric home palliative care
program. Journal of the American Geriatrics Society, 57(10), 1925–1931.
Huang, I. A., Neuhaus, J. M., & Chiong, W. (2016). Racial and ethnic differences in advance
directive possession: role of demographic factors, religious affiliation, and personal
health values in a national survey of older adults. Journal of Palliative Medicine, 19(2),
149-156.
Ibarra, A.B. (2022). California is expanding Medi-Cal – but hundreds of thousands of
immigrants will still be left behind. Cal Matters. Retrieved April 11, 2023, from
https://calmatters.org/health/2022/02/medi-cal-expansion-immigrants/
Institute of Medicine. (2015). Dying in America: Improving quality and honoring individual
preferences near the end of life. The National Academies Press.
Islam, J. Y., Braithwaite, D., Zhang, D., Guo, Y., Tailor, T. D., & Akinyemiju, T. (2022). Racial
and ethnic inequities of palliative care use among advanced Non‐Small cell lung cancer
patients in the US. Cancer Medicine.
Islam, J. Y., Deveaux, A., Previs, R. A., & Akinyemiju, T. (2021). Racial disparities in palliative
care utilization among metastatic gynecological cancer patients living at last follow-up:
An analysis of the National Cancer Data Base. Data in Brief, 34, 106705.
Copyright 2023 90
Jang, Y., Park, N. S., & Chiriboga, D. A. (2017). THE KNOWING-DOING GAP IN
ADVANCE DIRECTIVES IN ASIAN AMERICANS. Innovation in Aging, 30, 756-.
Jaramillo, S., & Hui, D. (2016). End-of-life care for undocumented immigrants with advanced
cancer: documenting the undocumented. Journal of Pain and Symptom Management,
51(4), 784-788.
Johnson, K. (2013). Racial and Ethnic Disparities in Palliative Care. Journal of Palliative
Medicine, 16(11), 1329–1334.
Johnson, T., Walton, S., Levine, S., Fister, E., Baron, A., & O’Mahony, S. (2020). Racial and
ethnic disparity in palliative care and hospice use. Am J Manag Care, 26(2), e36-e40.
Joo, M. K., Yoo, J. W., Mojtahedi, Z., Kim, P., Hwang, J., Koo, J. S., ... & Shen, J. J. (2022).
Ten-year trends of utilizing palliative care and palliative procedures in patients with
gastric Cancer in the United States from 2009 to 2018-a nationwide database study. BMC
Health Services Research, 22, 1-11.
Jones, R. C., Creutzfeldt, C. J., Cox, C. E., Haines, K. L., Hough, C. L., Vavilala, M. S.,
Williamson, T., Hernandez, A., Raghunathan, K., Bartz, R., Fuller, M., &
Krishnamoorthy, V. (2021). Racial and Ethnic Differences in Health Care Utilization
Following Severe Acute Brain Injury in the United States. Journal of intensive care
medicine, 36(11), 1258–1263. https://doi.org/10.1177/0885066620945911
Ju, M. R., Paul, S., Polanco, P., Augustine, M., Mansour, J., Wang, S., & Porembka, M. R.
(2021). Underutilization of palliative care in metastatic foregut cancer patients is
associated with socioeconomic disparities. Journal of Gastrointestinal Surgery, 25, 1404-
1411.
Kaiser Family Foundation. (n.d.). Distribution of Medicare beneficiaries by Race/Ethnicity.
Accessed March 19, 2023. https://www.kff.org/medicare/state-indicator/medicare-
beneficiaries-by-
raceethnicity/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%
22sort%22:%22asc%22%7D
Kao, D. (2009). Generational Cohorts, Age at Arrival, and Access to Health Services among
Asian and Latino Immigrant Adults. Journal of Health Care for the Poor and
Underserved, 20(2), 395–414.
Kamarck, E., & Stenglein, C. (2019). How many undocumented immigrants are in the United
States and who are they? Brooking Institution. Retrieved March 4, 2023, from
https://www.brookings.edu/policy2020/votervital/how-many-undocumented-immigrants-
are-in-the-united-states-and-who-are-they/
Karanth, S., Rajan, S. S., Revere, F. L., & Sharma, G. (2019). Factors Affecting Racial
Disparities in End-of-Life Care Costs Among Lung Cancer Patients. American Journal of
Clinical Oncology, 42(2), 143-153.
Karapetyan, L., Dawani, O., & Laird-Fick, H. S. (2018). End-Of-Life care for an undocumented
Mexican immigrant: resident perspective. Journal of Palliative Care, 33(2), 63-64.
Kata, A., Cenzer, I., Sudore, R. L., Covinsky, K. E., & Tang, V. L. (2020). Advance care
planning prior to death in older adults with hip fracture. Journal of General Internal
Medicine, 35, 1946-53.
Kelley, A. S., Deb, P., Du, Q., Aldridge Carlson, M. D., & Morrison, R. S. (2013). Hospice
enrollment saves money for Medicare and improves care quality across a number of
different lengths-of-stay. Health Affairs, 32(3), 552-561.
Copyright 2023 91
Kelley, A. S., Wenger, N. S., & Sarkisian, C. A. (2010). Opiniones: End-of-life care preferences
and planning of older Latinos. Journal of the American Geriatrics Society, 58(6), 1109-
16.
Khan, B. A., Sabel, A. L., & Boesen, K. (2013). Enhancing end-of-life care through best
practices. OchsnerJ, 13(4), 596-602.
Kim, Y., & Lee, M. (2017). The influence of hospice services on end-of-life care: Comparing
Hispanic and non-Hispanic white decedents. Journal of Aging and Health, 29(2), 291-
310.
Kirkendall, A., Holland, J. M., Keene, J. R., & Luna, N. (2015). Evaluation of hospice care by
family members of Hispanic and non-Hispanic patients. American Journal of Hospice
and Palliative Medicine®, 32(3), 313-321.
Ko, E., Cho, S., & Bonilla, M. (2012). Attitudes toward life-sustaining treatment: The role of
race/ethnicity. Geriatric Nursing, 33,341-349.
Ko, E., Lee, J., Ramirez, C., Martinez, S., & Lopez, D. (2017). Willingness to use hospice care
among caregivers of Latino patients in the United States–Mexico border
region. Palliative & Supportive Care, 15(3), 279-287
Kreling, B., Selsky, C., Perret-Gentil, M., Huerta, E. E., & Mandelblatt, J. S. (2010). 'The worst
thing about hospice is that they talk about death': Contrasting hospice decisions and
experience among immigrant Central and South American Latinos with US-born White,
non-Latino cancer caregivers. Palliative Medicine, 24(4), 427-434.
Krogstad, J.M., Passel, J.S., Noe-Bustamante, L. (2022). Key facts about U.S. Latinos for
National Hispanic Heritage Month. Retrieved from https://www.pewresearch.org/fact-
tank/2022/09/23/key-facts-about-u-s-latinos-for-national-hispanic-heritage-month/
Kuo, S., Rhodes, R. L., Mitchell, S. L., Mor, V., & Teno, J. M. (2009). Natural history of
feeding-tube use in nursing home residents with advanced dementia. Journal of the
American Medical Directors Association, 10(4), 264-270.
Kutner, J. S., Meyer, S. A., Beaty, B. L., Kassner, C. T., Nowels, D. E., & Beehler, C. (2004).
Outcomes and characteristics of patients discharged alive from hospice. Journal of the
American Geriatrics Society, 52(8), 1337-1342.
Lackan, N. A., Eschbach, K., Stimpson, J. P., Freeman, J. L., & Goodwin, J. S. (2009). Ethnic
differences in in-hospital place of death among older adults in California: effects of
individual and contextual characteristics and medical resource supply. Medical
care, 47(2), 138–145.
Ladha, T., Zubairi, M., Hunter, A., Audcent, T., & Johnstone, J. (2018). Cross-cultural
communication: Tools for working with families and children. Paediatrics & child
health, 23(1), 66–69. https://doi.org/10.1093/pch/pxx126
Laguna, J., Goldstein, R., Braun, W., & Enguídanos, S. (2014). Racial and ethnic variation in
pain following inpatient palliative care consultations. Journal of the American Geriatrics
Society, 62(3), 546-552.
Copyright 2023 92
Lamba, S., DeSandre, P. L., Todd, K. H., Bryant, E. N., Chan, G. K., Grudzen, C. R., ... & Quest,
T. E. (2014). Integration of palliative care into emergency medicine: the Improving
Palliative Care in Emergency Medicine (IPAL-EM) collaboration. The Journal of
Emergency Medicine, 46(2), 264-270.
Langan, E., Kamal, A. H., Miller, K. E., & Kaufman, B. G. (2021). Comparing palliative care
knowledge in metropolitan and nonmetropolitan areas of the United States: Results from
a National Survey. Journal of Palliative Medicine, 24(12), 1833-1839.
Leclere, F., Jensen, L., & Biddlecom, A. (1994). Health Care Utilization, Family Context, and
Adaptation Among Immigrants to the United States. Journal of Health and Social
Behavior, 35(4), 370-384
Lee, J., & Cagle, J. G. (2017). Factors Associated with Opinions About Hospice Among Older
Adults: Race, Familiarity With Hospice, and Attitudes Matter. Journal of Palliative Care,
32(3-4), 101-107.
Lin, P. J., Zhu, Y., Olchanski, N., Cohen, J. T., Neumann, P. J., Faul, J. D., ... & Freund, K. M.
(2022). Racial and ethnic differences in hospice use and hospitalizations at end-of-life
among medicare beneficiaries with dementia. JAMA Network Open, 5(6), e2216260-
e2216260.
Loggers, E. T., Maciejewski, P. K., Jimenez, R., et al. (2013). Predictors of intensive end-of-life
and hospice care in Latino and white advanced cancer patients. Journal of Palliative
Medicine, 16(10), 1249-1254.
Lopez, M. H., Krogstad, J., Passell, J.S. (2022). Who is Hispanic? Retrieved from
https://www.pewresearch.org/fact-tank/2022/09/15/who-is-hispanic/
LoPresti, M. A., Dement, F., & Gold, H. T. (2016). End-of-Life Care for People With Cancer
From Ethnic Minority Groups: A Systematic Review. American Journal of Hospice and
Palliative Care, 33(3), 291-305.
Lucas, J. W., Freeman, G., & Adams, P. F. (2016). Health of Hispanic Adults: United States,
2010-2014. NCHS data brief, (251), 1–8.
Lucia, L., Dietz, M., Jacobs, K., Chen, X., & Kominski, G. (2015). Which Californians will Lack
Health Insurance under the Affordable Care Act? UCLA Center for Health Policy
Research. Retrieved March 4, 2023, from
http://healthpolicy.ucla.edu/publications/Documents/PDF/2015/uninsuredbrief-
jan2015.pdf
Luckett, T., Goldstein, D., Butow, P. N., Gebski, V., Aldridge, L. J., McGrane, J., ... & King, M.
T. (2011). Psychological morbidity and quality of life of ethnic minority patients with
cancer: a systematic review and meta-analysis. The lancet oncology, 12(13), 1240-1248.
Copyright 2023 93
Luth, E. A., Russell, D. J., Brody, A. A., Dignam, R., Czaja, S. J., Ryvicker, M., ... & Prigerson,
H. G. (2020). Race, ethnicity, and other risks for live discharge among hospice patients
with dementia. Journal of the American Geriatrics Society, 68(3), 551-558.
Lutenbacher, M., Elkins, T., & Dietrich, M. S. (2022). Using community health workers to
improve health outcomes in a sample of Hispanic women and their infants: Findings from
a randomized controlled trial. Hispanic Health Care International.
Mack, J. W., Paulk, M. E., Viswanath, K., & Prigerson, H. G. (2010). Racial disparities in the
outcomes of communication on medical care received near death. Archives of internal
medicine, 170(17), 1533-1540.
Maly, R. C., Stein, J. A., Umezawa, Y., Leake, B., & Anglin, M. D. (2008). Racial/ethnic
differences in breast cancer outcomes among older patients: effects of physician
communication and patient empowerment. Health Psychology, 27(6), 728.
Marcotte, K., & Schoenfarber, A. (2022). Caring for Undocumented Noncitizens: The Palliative
Care Team's Role. Center to Advance Palliative Care. Retrieved March 4, 2023, from
https://www.capc.org/blog/caring-for-undocumented-noncitizens-the-palliative-care-
teams-role/
Medicare Payment Advisory Commission. (2020). Report to the Congress: Medicare Payment
Policy. Retrieved from https://www.medpac.gov/document/http-www-medpac-gov-docs-
default-source-reports-mar20_entirereport_sec-pdf/
Mehanna, E. K., Catalano, P. J., Cagney, D. N., Haas-Kogan, D. A., Alexander, B. M., Tulsky, J.
A., & Aizer, A. A. (2020). Hospice Utilization in Elderly Patients With Brain
Metastases. Journal of the National Cancer Institute, 112(12), 1251–1258.
https://doi.org/10.1093/jnci/djaa036
Meier, D. E. (2011). Increased access to palliative care and hospice services: opportunities to
improve value in health care. The Milbank Quarterly, 89(3), 343-380
Mendieta, M., & Miller, A. (2018). Sociodemographic Characteristics and Lengths of Stay
Associated With Acute Palliative Care: A 10-Year National Perspective. The American
journal of hospice & palliative care, 35(12), 1512–1517.
https://doi.org/10.1177/1049909118786409
Metchnikoff, C., Naughton, G., & Periyakoil, V. S. (2018). End-of-life care for unauthorized
immigrants in the US. Journal of Pain and Symptom Management, 55(5), 1400-1407.
Meyer, D. Z., & Avery, L. M. (2009). Excel as a qualitative data analysis tool. Field Methods,
21(1), 91-112.
Migration Policy Institute. (2019). Profile of the Unauthorized Population: United States.
Retrieved March 19, 2023, from https://www.migrationpolicy.org/data/unauthorized-
immigrant-population/state/US
Copyright 2023 94
Moens, K., Higginson, I. J., Harding, R., Brearley, S., Caraceni, A., Cohen, J., ... & Van den
Block, L. (2014). Are there differences in the prevalence of palliative care-related
problems in people living with advanced cancer and eight non-cancer conditions? A
systematic review. Journal of pain and symptom management, 48(4), 660-677.
Nápoles, A. M., Santoyo-Olsson, J., Stewart, A. L., Ortiz, C., & García-Jímenez, M. (2013).
Evaluating the implementation of a translational peer-delivered stress management
program for Spanish-speaking Latina breast cancer survivors. Journal of Cancer
Education, 28(3), 458-465.
National Hospice and Palliative Care Organization. (2020). NHPCO Facts and Figures 2020.
August 2020. Accessed January 5, 2022. https://www.nhpco.org/wp-
content/uploads/NHPCO-Facts-Figures-2020-edition.pdf
National Hospice and Palliative Care Organization. (2022). NHPCO Facts and Figures 2022.
Accessed March 20, 2022. https://www.nhpco.org/wp-content/uploads/NHPCO-Facts-
Figures-2022.pdf
National Hospice and Palliative Care Organization. (n.d.). The Medicare Hospice Benefit.
National Hospice and Palliative Care Organization.
https://www.uclahealth.org/palliative-care/Workfiles/Medicare-Hospice-Benefit.pdf.
National Institute on Aging. Health Disparities Framework. Retrieved March 4, 2023, from
https://www.nia.nih.gov/research/osp/framework
Nguyen, M. T., Feeney, T., Kim, C., Drake, F. T., Mitchell, S. E., Bednarczyk, M., & Sanchez,
S. E. (2021). Patient-level factors influencing palliative care consultation at a safety-net
Urban Hospital. American Journal of Hospice and Palliative Medicine®, 38(11), 1299-
1307.
Nicholson, B. L., Flynn, L., Savage, B., Zha, P., & Kozlov, E. (2022). Hospice Referral in
Advanced Cancer in New Jersey. Journal of hospice and palliative nursing : JHPN : the
official journal of the Hospice and Palliative Nurses Association, 24(3), 167–174.
https://doi.org/10.1097/NJH.0000000000000845
Norris, A. E., Ford, K., & Bova, C. A. (1996). Psychometrics of a brief acculturation scale for
Hispanics in a probability sample of urban Hispanic adolescents and young adults.
Hispanic Journal of Behavioral Sciences,18(1), 29-38.
Nuila, R. (2012). Home: palliation for dying undocumented immigrants. New England Journal of
Medicine, 366(22), 2047-2048.
Nwadiuko, J., German, J., Chapla, K., Wang, F., Venkataramani, M., Vaidya, D., & Polk, S.
(2021). Changes in health care use among undocumented patients, 2014-2018. JAMA
Network Open, 4(3), e210763.
Copyright 2023 95
Nwogu-Onyemkpa, E., Dongarwar, D., Salihu, H. M., Akpati, L., Marroquin, M., Abadom, M.,
& Naik, A. D. (2022). Inpatient palliative care use by patients with sickle cell disease: a
retrospective cross-sectional study. BMJ open, 12(8), e057361.
Ojeda-Leitner, D., & Lewis, R. K. (2021). Assessing health-related stereotype threats and mental
healthcare experiences among a LGBT sample. Journal of prevention & intervention in
the community, 49(3), 251-265.
Okafor, P., Stobaugh, D., Nnadi, A., & Talwalkar, J. (2017). Determinants of Palliative Care
Utilization Among Patients Hospitalized With Metastatic Gastrointestinal Malignancies.
American Journal of Hospice and Palliative Medicine®, 34(3), 269–274.
Orlovic, M., Smith, K., & Mossialos, E. (2019). Racial and ethnic differences in end-of-life care
in the United States: Evidence from the Health and Retirement Study (HRS). SSM-
population health, 7, 100331.
Ortega, A. N., Fang, H., Perez, V. H., Rizzo, J. A., Carter-Pokras, O.,Wallace, S. P., & Gelberg,
L. (2007). Health care access, use of services, and experiences among undocumented
Mexicans and other Latinos. Archives of Internal Medicine, 167 (21), 2354-2360.
Palacios, R., Lewis, F. M., Reyes, C. L., Griffith, K., Zahlis, E., Shands, M. E. (2023). A pilot
feasibility study of Conexiones, a telephone-delivered cancer parenting education
program for Hispanic mothers. Journal of Psychosocial Oncology, 41(1), 104-22.
Pan, C. X., Abraham, O., Giron, F., LeMarie, P., & Pollack, S. (2015). Just ask:hospice
familiarity in Asian and Hispanic adults. Journal of Pain and Symptom Management,
49(5), 928-933.
Pathak, E. B., Wieten, S., & Djulbegovic, B. (2014). From hospice to hospital: short-term
follow-up study of hospice patient outcomes in a US acute care hospital surveillance
system. BMJ open, 4(7), e005196.
Park, N. S., Carrion, I. V., Lee, B. S., Dobbs, D., Shin, H. J., & Becker, M. A. (2012). The role
of race and ethnicity in predicting length of hospice care among older adults. Journal of
palliative medicine, 15(2), 149-153.
Park, N. S., Jang, Y., Ko, J. E., & Chiriboga, D. A. (2016). Factors affecting willingness to use
hospice in racially/ethnically diverse older men and women. American Journal of
Hospice and Palliative Medicine®, 33(8), 770-776.
Pathak, E. B., Wieten, S., & Djulbegovic, B. (2014). From hospice to hospital: short-term
follow-up study of hospice patient outcomes in a US acute care hospital surveillance
system. BMJ open, 4(7), e005196.
Perkins, H. S., Geppert, C. M., Gonzales, A., Cortez, J. D., & Hazuda, H. P. (2002). Cross-
cultural similarities and differences in attitudes about advance care planning. Journal of
General Internal Medicine, 17, 48-57.
Copyright 2023 96
Peterson, L. J., Hyer, K., Meng, H., Dobbs, D., Gamaldo, A., & O’Neil, K. (2019). Discussing
end-of-life care preferences with family: Role of race and ethnicity. Research on
Aging, 41(9), 823-844.
Petronis, V. M., Carver, C. S., Antoni, M. H., & Weiss, S. (2003). Investment in body image and
psychosocial well-being among women treated for early stage breast cancer: partial
replication and extension. Psychology and Health, 18(1), 1-13.
Pew Research Center. (2018). Key facts about U.S. Latinos and the 2018 midterm elections.
Retrieved from https://www.pewresearch.org/fact-tank/2018/10/15/key-facts-about-
latinos-in-the-2018-midterm-elections/
Portanova, J., Ailshire, J., Perez, C., Rahman, A., & Enguidanos, S. (2017). Ethnic differences in
advance directive completion and care preferences: what has changed in a decade?.
Journal of the American Geriatrics Society, 65(6), 1352-7.
Price, R. A., Parast, L., Haas, A., Teno, J. M., & Elliott, M. N. (2017). Black and Hispanic
patients receive hospice care similar to that of white patients when in the same
hospices. Health Affairs, 36(7), 1283-1290.
Quinones-Gonzalez, S. (2013). Bridging the communication gap in hospice and palliative care
for Hispanics and Latinos. OMEGA-Journal of Death and Dying, 67(1-2), 193-200.
Rahman, A. N., Bressette, M., Gassoumis, Z. D., & Enguidanos, S. (2016). Nursing home
residents’ preferences on physician orders for life sustaining treatment. The
Gerontologist, 56(4), 714-722.
Ramírez, M., Ford, M. E., Stewart, A. L., & Teresi, J. A. (2005). Measurement issues in health
disparities research. Health Services Research, 40(5 Pt 2),1640-1657.
Rao, J. K., Anderson, L. A., Lin, F. C., & Laux, J. P. (2014). Completion of advance directives
among US consumers. American journal of preventive medicine, 46(1), 65-70.
Rising, M. L., Hassouneh, D. S., Lutz, K. F., Berry, P., & Lee, C. S. (2019). Hispanic Hospice
Utilization: Integrative Review and Meta-analysis. Journal of Health Care for the Poor
and Underserved, 30(2), 468-494.
Russell, D., Baik, D., Jordan, L., Dooley, F., Hummel, S. L., Prigerson, H. G., ... & Creber, R.
M. (2019). Factors associated with live discharge of heart failure patients from hospice: a
multimethod study. JACC: Heart Failure, 7(7), 550-557.
Russell, D., Diamond, E. L., Lauder, B., Dignam, R. R., Dowding, D. W., Peng, T. R., ... &
Bowles, K. H. (2017). Frequency and risk factors for live discharge from
hospice. Journal of the American Geriatrics Society, 65(8), 1726-1732.
Russell, D., Luth, E. A., Ryvicker, M., Bowles, K. H., & Prigerson, H. G. (2020). Live discharge
from hospice due to acute hospitalization: The role of neighborhood socioeconomic
characteristics and race/ethnicity. Medical care, 58(4), 320.
Copyright 2023 97
Sammon, J. D., McKay, R. R., Kim, S. P., et al. (2015). Burden of hospital admissions and
utilization of hospice care in metastatic prostate cancer patients. Urology, 85(2), 343-349.
Selsky, C., Kreling, B., Luta, G., Makgoeng, S. B., & Mandelblatt, J. S. (2012). Hospice
knowledge and intentions among Latinos using safety-net clinics. Journal of Palliative
Medicine, 15(9), 984-990.
Sharma, R. K., Cameron, K. A., Chmiel, J. S., Von Roenn, J. H., Szmuilowicz, E., Prigerson, H.
G., & Penedo, F. J. (2015). Racial/ethnic differences in inpatient palliative care
consultation for patients with advanced cancer. Journal of Clinical Oncology, 33(32),
3802.
Silveira, M. J., Wiitala, W., & Piette, J. (2014). Advance directive completion by elderly
Americans: a decade of change. Journal of the American Geriatrics Society, 62(4), 706-
710.
Singer, A. E., Meeker, D., Teno, J. M., Lynn, J., Lunney, J. R., & Lorenz, K. A. (2015).
Symptom trends in the last year of life from 1998 to 2010: a cohort study. Annals of
internal medicine, 162(3), 175-183.
Smith, A. K., McCarthy, E. P., Paulk, E., Balboni, T. A., Maciejewski, P. K., Block, S. D., &
Prigerson, H. G. (2008). Racial and ethnic differences in advance care planning among
patients with cancer: impact of terminal illness acknowledgment, religiousness, and
treatment preferences. Journal of Clinical Oncology, 26(25), 4131.
Smith, A., Sudore, R., & Pérez-Stable, E. (2009). Palliative Care for Latino Patients and Their
Families: Whenever We Prayed, She Wept. JAMA, 301(10), 1047–1057.
Smeltz, R. (2016). Elective repatriation for undocumented immigrants at end of life. Journal of
Hospice & Palliative Nursing, 18(2), 92-97.
Stajduhar, K. I., Allan, D. E., Cohen, S. R., & Heyland, D. K. (2008). Preferences for location of
death of seriously ill hospitalized patients: perspectives from Canadian patients and their
family caregivers. Palliative Medicine, 22(1), 85-88
Stepler, R., & Lopez, M. H. (2019, December 30). Ranking the Latino population in the states.
Pew Research Center's Hispanic Trends Project.
https://www.pewresearch.org/hispanic/2016/09/08/4-ranking-the-latino-population-in-
the-states/.
Sudore, R. L., Boscardin, J., Feuz, M. A., McMahan, R. D., Katen, M. T., & Barnes, D. E.
(2017). Effect of the PREPARE website vs an easy-to-read advance directive on advance
care planning documentation and engagement among veterans: a randomized clinical
trial. JAMA Internal Medicine, 177(8), 1102-9.
Sudore, R. L., Schillinger, D., Knight, S. J., & Fried, T. R. (2010). Uncertainty about advance
care planning treatment preferences among diverse older adults. Journal of Health
Communication, 15(2), 159-71.
Copyright 2023 98
Suolang, D., Chen, B. J., & Faigle, R. (2022). Temporal Trends in Racial and Ethnic Disparities
in Palliative Care Use After Intracerebral Hemorrhage in the United States. Stroke, 53(3),
e85-e87.
Tang S. T. (2003). When death is imminent: where terminally ill patients with cancer prefer to
die and why. Cancer nursing, 26(3), 245–251.
Taylor Jr, D. H., Ostermann, J., Van Houtven, C. H., Tulsky, J. A., & Steinhauser, K. (2007).
What length of hospice use maximizes reduction in medical expenditures near death in
the US Medicare program?. Social science & medicine, 65(7), 1466-1478.
Taylor, J. S., Rajan, S. S., Zhang, N., Meyer, L. A., Ramondetta, L. M., Bodurka, D. C., Lairson,
D. R., & Giordano, S. H. (2017). End-of-Life Racial and Ethnic Disparities Among
Patients With Ovarian Cancer. Journal of clinical oncology : official journal of the
American Society of Clinical Oncology, 35(16), 1829–1835.
Taylor, J. S., Zhang, N., Rajan, S. S., Chavez-MacGregor, M., Zhao, H., Niu, J., ... & Giordano,
S. H. (2019). How we use hospice: Hospice enrollment patterns and costs in elderly
ovarian cancer patients. Gynecologic oncology, 152(3), 452-458.
Teno, J. M., Bowman, J., Plotzke, M., Gozalo, P. L., Christian, T., Miller, S. C., ... & Mor, V.
(2015). Characteristics of hospice programs with problematic live discharges. Journal of
Pain and Symptom Management, 50(4), 548-552.
Teno, J. M., Casarett, D., Spence, C., & Connor, S. (2012). It is “too late” or is it? Bereaved
family member perceptions of hospice referral when their family member was on hospice
for seven days or less. Journal of pain and symptom management, 43(4), 732-738.
Teno, J. M., Clarridge, B. R., Casey, V., et al. (2004). Family Perspectives on End-of-Life Care
at the Last Place of Care. JAMA: The Journal of the American Medical Association,
291(1), 88-93.
Teno, J. M., Gozalo, P. L., Lee, I. C., et al. (2011). Does hospice improve quality of care for
persons dying from dementia?. Journal of the American Geriatrics Society, 59(8), 1531-
1536.
Teno, J. M., Gruneir, A., Schwartz, Z., Nanda, A., & Wetle, T. (2007). Association between
advance directives and quality of end-of-life care: A national study. Journal of the
American Geriatrics Society, 55(2), 189-94.
Teno, J. M., Shu, J. E., Casarett, D., Spence, C., Rhodes, R., & Connor, S. (2007). Timing of
referral to hospice and quality of care: length of stay and bereaved family members'
perceptions of the timing of hospice referral. Journal of pain and symptom
management, 34(2), 120-125.
Teoli, D., & Ghassemzadeh, S. (2019). Patient self-determination act.
Copyright 2023 99
Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative
research (COREQ): a 32-item checklist for interviews and focus groups. International
Journal for Quality in Health Care, 19(6), 349–357.
Tsui, J., Martinez, B., Shin, M. B., Allee-Munoz, A., Rodriguez, I., Navarro, J., Thomas-Barrios,
K. R., Kast, W. M., & Baezconde-Garbanati, L. (2022). Understanding medical mistrust
and HPV vaccine hesitancy among multiethnic parents in Los Angeles. Journal of
Behavioral Medicine, 1-6.
United States Census Bureau. (n.d). Quick Facts. Accessed January 5, 2022. Retrieved from
https://www.census.gov/quickfacts/fact/table/US/RHI725219
U.S. Census Bureau. (2018). Hispanic Population Projected to More than Double by 2060.
Retrieved from https://www.census.gov/library/visualizations/2018/comm/hispanic-
projected-pop.html
U.S. Census Bureau. (2019). QuickFacts: California. Retrieved from
https://www.census.gov/quickfacts/fact/table/CA/RH|725219
United States Census Bureau. (2021). About the Hispanic Population and its Origin. December
3, 2021. Accessed on January 6, 2022.
https://www.census.gov/topics/population/hispanic-origin/about.html
U.S. Census Bureau. (2021). QuickFacts: Los Angeles County, California. Retrieved from
https://www.census.gov/quickfacts/fact/table/losangelescountycalifornia/RH|725221
U.S. Office of Management and Budget. (n.d.). Revisions to the Standards for the Classification
of Federal Data on Race and Ethnicity. Retrieved from
https://obamawhitehouse.archives.gov/omb/fedreg_1997standards
Vargas Bustamante, A., Fang, H., Garza, J., Carter-Pokras, O., Wallace, S. P., Rizzo, J. A., &
Ortega, A. N. (2012). Variations in healthcare access and utilization among Mexican
immigrants: the role of documentation status. Journal of immigrant and minority health,
14(1), 146–155.
Waldrop, D. P., Meeker, M. A., & Kutner, J. S. (2016). Is it the Difference a Day Makes?
Bereaved Caregivers' Perceptions of Short Hospice Enrollment. Journal of Pain and
Symptom Management, 52(2), 187-195.1.
Wallace, S., Torres, J., Sadegh-Nobari, T, et al. (2012). Undocumented Immigrants and Health
Care Reform. Los Angeles, CA: UCLA Center for Health Policy Research
Wallace, S. P., Torres, J. M., Nobari, T. Z., & Pourat, N. (2013). Undocumented and Uninsured:
Barriers to Affordable Care for Immigrant Populations. UCLA Center for Health Policy
Research. Retrieved March 4, 2023, from
https://www.commonwealthfund.org/sites/default/files/documents/___media_files_public
ations_fund_report_2013_aug_1699_wallace_undocumented_uninsured_barriers_immigr
ants_v2.pdf
Copyright 2023 100
Walton, G. M., & Spencer, S. J. (2009). Latent ability: Grades and test scores systematically
underestimate the intellectual ability of negatively stereotyped students. Psychological
Science, 20(9), 1132-9.
Wan, S., Lorenz, K. A., Fischer, S. M., Liao, S., Lee, M. C., & Kutner, J. S. (2023). Local Area
Hospice Capacity and Rural Disparities in Hospice Use among Older Adults with
Metastatic Breast Cancer. Journal of Palliative Medicine, 26(2), 182-190.
Wang, S. Y., Hsu, S. H., Aldridge, M. D., Cherlin, E., & Bradley, E. (2019). Racial differences
in health care transitions and hospice use at the end of life. Journal of Palliative
Medicine, 22(6), 619-627.
Weech-Maldonado, R., Elliott, M., Pradhan, R., Schiller, C., Hall, A., & Hays, R. D. (2012). Can
hospital cultural competency reduce disparities in patient experiences with care?. Medical
care, 50 Suppl(0), S48–S55.
Wilkie, D. J., Ezenwa, M. O., Yao, Y., Gill, A., Hipp, T., Shea, R., ... & Wang, Z. W. (2017).
Pain intensity and misconceptions among hospice patients with cancer and their
caregivers: Status after 2 decades. American Journal of Hospice and Palliative
Medicine®, 34(4), 318-324.
Williamson, T. L., Adil, S. M., Shalita, C., Charalambous, L. T., Mitchell, T., Yang, Z., ... &
Komisarow, J. M. (2022). Palliative care consultations in patients with severe traumatic
brain injury: who receives palliative care consultations and what does that mean for
utilization?. Neurocritical care, 1-10.
Wilson, A., Martins-Welch, D., Williams, M., Tortez, L., Kozikowski, A., Earle, B., ... &
Pekmezaris, R. (2018). Risk factor assessment of hospice patients readmitted within 7
days of acute care hospital discharge. Geriatrics, 3(1), 4.
Wittenberg, E., Goldsmith, J., Chen, C., & Ragan, S. L. (2017). The Development of the
Palliative Care Communication Competencies for Medical Students: Identifying and
Responding to the Needs of Patients and Families. Journal of Palliative Medicine, 20(3),
279-284.
Wittenberg-Lyles, E., Villagran, M. M., & Hajek, C. (2008). The impact of communication,
attitudes, and acculturation on advance directives decision-making. Journal of Ethnic &
Cultural Diversity in Social Work,17(4), 349-64
Worster, B., Bell, D. K., Roy, V., Cunningham, A., LaNoue, M., & Parks, S. (2018). Race as a
predictor of palliative care referral time, hospice utilization, and hospital length of stay: a
retrospective noncomparative analysis. American Journal of Hospice and Palliative
Medicine®, 35(1), 110-116.
Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., Mitchell, S. L., Jackson,
V. A., Block, S. D., Maciejewski, P. K., & Prigerson, H. G. (2008). Associations between
end-of-life discussions, patient mental health, medical care near death, and caregiver
bereavement adjustment. JAMA, 300(14), 1665-73.
Copyright 2023 101
Yadav, K. N., Gabler, N. B., Cooney, E., Kent, S., Kim, J., Herbst, N., Mante, A., & Halpern, S.
D. (2017). Approximately one in three US adults completes any type of advance directive
for end-of-life care. Health Affairs, 36(7), 1244-51.
Yanez, B., Thompson, E. H., & Stanton, A. L. (2011). Quality of life among Latina breast cancer
patients: a systematic review of the literature. Journal of Cancer Survivorship, 5, 191-
207.
Yang, P. , & Hwang, S. (2016). Explaining Immigrant Health Service Utilization: A Theoretical
Framework. SAGE Open, 6 (2).
Yu, M., Kelley, A. T., Morgan, A. U., Duong, A., Mahajan, A., & Gipson, J. D. (2020).
Challenges for adult undocumented immigrants in accessing primary care: A qualitative
study of health care workers in Los Angeles County. Health Equity, 4(1), 366-374.
Zaide, G. B., Pekmezaris, R., Nouryan, C. N., Mir, T. P., Sison, C. P., Liberman, T., Lesser, M.
L., Cooper, L. B., & Wolf-Klein, G. P. (2013). Ethnicity, race, and advance directives in
an inpatient palliative care consultation service. Palliative & supportive care, 11(1), 5–
11.
Zamora, S. M., Pinheiro, P. S., Gomez, S. L., Hastings, K. G., Palaniappan, L. P., Hu, J., &
Thompson, C. A. (2019). Disaggregating Hispanic American Cancer Mortality Burden by
Detailed Ethnicity. Cancer epidemiology, biomarkers & prevention : a publication of the
American Association for Cancer Research, cosponsored by the American Society of
Preventive Oncology, 28(8), 1353–1363. https://doi.org/10.1158/1055-9965.EPI-18-0872
Zhu, Y., & Enguídanos, S. (2019). When patients say they know about palliative care, how much
do they really understand?. Journal of pain and symptom management, 58(3), 460-464.
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APPENDICES
Appendix A: Search Strategy
(‘hospice care’/exp OR ’palliative therapy’/exp OR ’respite care’/exp OR ’palliative
nursing’/exp OR ‘hospice’/exp OR ‘terminal care’/de OR ‘terminally ill patient’/exp OR
Hospice OR hospices
OR
(
(Palliativ* OR Bereavement OR bereavements OR respite
OR respites OR terminal* OR ‘end* of life’) Near/8
(care OR cares OR treatment OR treatments OR therap* OR program OR programs OR patient
OR patients OR facility OR facilities)
))
AND
(
’hispanic’/exp OR ‘central american’/exp OR ‘cuban’/exp
OR ‘dominican (dominican republic)’/exp OR ‘puerto rican’/ exp OR ‘argentinian’/exp OR
‘bolivian’/exp OR ‘brazilian’/ exp OR ‘chilean’/exp OR ‘colombian’/exp OR ‘ecuadorean’/ exp
OR ‘paraguayan’/exp OR ‘peruvian’/exp OR
‘uruguayan’/exp OR ‘venezuelan’/exp OR hispanic OR his
panics OR latina OR latinas OR latino OR latinos OR latinx OR argentino OR argentinos OR
argentina OR argentinas OR argentine OR argentines OR argentinian OR boliviano OR
bolivianos OR boliviana OR bolivianas OR bolivia OR bo- livian OR Bolivians OR brasil OR
brasileno OR brasilenos OR brasilena OR brasilenas OR brasileiro OR brasileiros OR brasileira
OR brasileiras OR brazil OR brazilian OR brazilians OR chileno OR chilenos OR chilena OR
chilenas OR Chile OR chilean OR chileans OR colombiano OR colombianos OR colombiana
OR colombianas OR colombia OR colombian OR colombians OR costarricense OR ‘costa rica’
OR ‘costa rican’ OR ‘costa ricans’ OR cubano OR cubanos OR cubana OR cubanas OR cuba
OR cuban OR Cubans OR dominicano OR dominicanos OR dominicana OR dominicanas OR
dominican OR dominicans OR ecuatoriano OR ecuatorianos OR ecua- toriana OR ecuatorianas
OR ecuador OR ecuadorian OR ecuadorians OR salvadorenos OR salvadoreno OR salva-
dorenas OR salvadorena OR ‘el salvador’ OR salvadorian OR Salvadorians OR guatemalteco
OR guatemaltecos OR gua- temaltecas OR guatemalteca OR guatemala OR guatemalan OR
guatemalans OR hondurenos OR hondureno OR hon- durenas OR hondurena OR honduras OR
honduran OR hondurans OR chicana OR chicanas OR chicano OR chicanos OR mexicano OR
mexicanos OR mexicana OR mexicanas OR mexico OR mexican OR mexicans OR
nicaraguenses OR nicaraguense OR nicaragua OR nicaraguan OR Nicaraguans OR panameno
Copyright 2023 103
OR panamenos OR panamenas OR panamena OR panama OR panamanian OR panamanians OR
paraguayo OR paraguayos OR paraguaya OR paraguayas OR paraguay OR paraguayan OR
paraguayans OR peruano OR peruanos OR peruana OR peruanas OR peru OR peruvian OR
Peruvians OR puertorriqueno OR puertorriquenos OR puerorriquenas OR puertorriquena OR
‘puerto rico’ OR ‘puerto rican’ OR ‘puerto ricans’ OR uruguayo OR uruguayos OR uruguaya
OR uruguayas OR uruguay OR uruguayan OR Uruguayans OR venezolano OR venezolanos OR
venezolanas OR venezolana OR venezuela OR venezuelan OR venezuelans OR belizeans OR
belizian OR belizians OR belize OR belizean OR afro- latinos OR afro-latino OR afro-latina OR
afro-latinas
)
AND
(‘united states’/exp OR ‘united states’ OR ‘usa’ OR
‘America*’)
Abstract (if available)
Abstract
The rapidly growing Hispanic population in the U.S., represents 19% of the population as of 2021, and experiences significant healthcare disparities, particularly in access to hospice and palliative care. This dissertation comprises three studies that aim to investigate and address these disparities through a comprehensive analysis of hospice, palliative care, and advance care planning.
This dissertation was guided by Andersen's behavioral model of health services use and Yang and Hang's adaptation of Andersen's model. The first study systematically reviews 41 peer- reviewed articles from Ovid Medline (PubMed), EMBASE, and CINAHL, assessing Hispanics' knowledge and attitudes towards hospice, barriers and facilitators to hospice use, utilization patterns, and hospice-related outcomes. The systematic literature review highlights lower hospice knowledge and awareness among Hispanics and mixed results around hospice use and outcomes in comparison to Whites.
The second study conducts semi-structured, individual telephone interviews with 11 team members from two palliative care teams in two inner city hospitals in California. It investigates the challenges and facilitators that palliative care team members face when caring for seriously ill undocumented immigrants, as well as factors affecting access to care in this population. Findings reveal that complications of postponing care, financial burden, fear of deportation, transportation, health literacy, lack of family support, and misperceptions of palliative care contribute to care-seeking behaviors and challenges. Provider care challenges include language barriers, longer care processes, and cultural barriers.
The third study explores the relationship between healthcare stereotype threat, language acculturation, and engagement in advance care planning activities among 50 Spanish-speaking, Hispanic patients with chronic life-limiting illnesses over the age of 40. Results indicate that healthcare stereotype threat and acculturation significantly influence advance care planning conversations and the development of advance directives.
The findings of these studies emphasize the influence of healthcare stereotype threat and acculturation on advance care planning, underscore the need for interventions to address barriers faced by undocumented immigrants, and demonstrate the relative lack of research focused specifically on the Hispanic population's experiences with end-of-life care. Future research should focus on testing interventions to overcome disparities and improve access to quality hospice and palliative care for terminally ill Hispanics.
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Asset Metadata
Creator
Cardenas, Valeria
(author)
Core Title
Exploring end-of-life care experiences and disparities among Hispanic populations in the United States
School
Leonard Davis School of Gerontology
Degree
Doctor of Philosophy
Degree Program
Gerontology
Degree Conferral Date
2023-12
Publication Date
09/12/2023
Defense Date
04/26/2023
Publisher
Los Angeles, California
(original),
University of Southern California
(original),
University of Southern California. Libraries
(digital)
Tag
acculturation,advance care planning,Hispanic,hospice care,Latino,OAI-PMH Harvest,palliative care,undocumented immigrants
Format
theses
(aat)
Language
English
Contributor
Electronically uploaded by the author
(provenance)
Advisor
Enguidanos, Susan (
committee chair
), Coulourides Kogan, Alexis (
committee member
), Saenz, Joseph (
committee member
), Wilber, Kathleen (
committee member
)
Creator Email
valecardenas24@gmail.com,vlcarden@usc.edu
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https://doi.org/10.25549/usctheses-oUC113310131
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etd-CardenasVa-12370.pdf (filename)
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Document Type
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theses (aat)
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Cardenas, Valeria
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Tags
acculturation
advance care planning
Hispanic
hospice care
Latino
palliative care
undocumented immigrants