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Palliative care: breaking the knowledge barrier among community-based older adults

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Palliative Care:

Breaking The Knowledge Barrier Among Community-Based Older Adults

by

Deborah Fui-Yuen Hoe

A Dissertation Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the Requirements for the Degree
DOCTOR OF PHILOSOPHY
GERONTOLOGY

August 2021

Copyright 2021 Deborah Fui-Yuen Hoe
ii

DEDICATION
In loving memory of my Ah Pa (father), Mickey Voon-Ping Hoe.
You never understood why I chose to do this, but you supported me anyhow. That’s love.

I miss you. I love you.
iii
ACKNOWLEDGMENTS
I am first and foremost so grateful to God for the graces I received throughout my tenure
at the University of Southern California’s (USC) Leonard Davis School of Gerontology (LDS).
I would like to record my deepest gratitude to my committee members:
Dr. Susan Enguidanos, for being the best darn mentor to me. You seamlessly switched
roles from advisor to mentor, from teacher to confidante. You respected my individuality and
did everything you could to help me through my loss and grief. You encouraged me to celebrate
each milestone on this long and winding journey. I could never repay your kindness towards me
and by golly, your love and care.
Dr. Eileen Crimmins and Dr. Jessica Ho, for being uber-supportive. I appreciate your
advice and your generosity in sharing your time and knowledge with me.
I would also like to acknowledge my peers in the Enguidanos Lab, past and present, but
especially Dr. Anna Rahman for your guidance and the research assistants who tirelessly helped
me secure study participants.
I am deeply indebted to the following individuals for so many reasons and on so many
levels: Mom; my brothers, Brandon Hoe and Chatwin Hoe; my kindred spirit, Ai Yat Goh; my
friends, especially Dr. Joe Misiewicz, Dr. Jennifer Forsythe, and Dr. Diana Wang who simply
understood and helped me plough on.
I am so fortunate to have had these people by my side, who made me laugh and who held
me up when I was in the depths of despair. I am eternally grateful.

iv
TABLE OF CONTENTS
Dedication…………………………………………………………………………………………ii
Acknowledgments………………………………………………………………………………..iii
List of Tables……………………………………………………………………………………...v
List of Figures…………………………………………………………………………………….vi
Abstract……………………………………………………………………………………….....viii
Chapter 1: Literature Review and Research Gap………………………………………………….1
Definition of Palliative Care………………………………………………………………1
Models of Palliative Care………………………………………………………………….1
Evidence of Palliative Care Effectiveness………………………………………………...4
Consumer Awareness of Palliative Care…………………………………………………..6
Current Efforts of Increasing Palliative Care Awareness…………………………………8
Gaps in Current Approaches………..……………………………………………………10
Effectiveness of Role Model Stories in Health Promotion………………………………11
Theoretical Frameworks…………………………………………………………………12
Purpose of this Dissertation……………………………………………………………...13
Chapter 2: Identifying Paths Forward: Expanding Palliative Care to Safety-Net Patients in
California………………………………………………………………………………………...17
Introduction………………………………………………………………………………17
Methods…………………………………………………………………………………..18
Results……………………………………………………………………………………20
Discussion………………………………………………………………………………..23
v
Chapter 3: Theory-Driven Role Model Stories Improve Palliative Care Knowledge Among a
Diverse Older Population………………………………………………………………………...29
Introduction………………………………………………………………………………29
Methods…………………………………………………………………………………..32
Results……………………………………………………………………………………36
Discussion………………………………………………………………………………..37
Chapter 4: Does Race Matter? Association Between Racial Concordance, Improvement in
Knowledge, and Changes in Intent………………………………………………………………43
Introduction………………………………………………………………………………43
Methods…………………………………………………………………………………..44
Results……………………………………………………………………………………50
Discussion………………………………………………………………………………..54
Chapter 5: Discussion, Limitations, and Conclusion…………………………………………….64
References………………………………………………………………………………………..68

vi
LIST OF TABLES
Table 1. Patient semi-structured interview protocol……………………………………………..26
Table 2. Study I Sample Characteristics…………………………………………………………27
Table 3. Themes and Definitions for Patient-Identified Barriers………………………………..28
Table 4. Study II Participant Demographics...…………………………………………………...40
Table 5. Responses to Knowledge Questions….………………………………………………...41
Table 6. Multilevel Regressions of Change in Knowledge Scores (b)…………………………..42
Table 7. In-person Recruitment Model…………………………………………………………..57
Table 8. Online Recruitment Model……………………………………………………………..57
Table 9. Study III Descriptive Statistics…………………………………………………………58
Table 10. Responses to Knowledge Questions (N=404)………………………………………...60
Table 11. Regression Analysis: Predictors of Total Posttest Scores…………………………….61
Table 12. Changes in intent to enroll in palliative care from pretest to posttest………………...62
Table 13. Changes in intent to enroll in palliative care by race concordance…………………...62
vii
LIST OF FIGURES
Figure 1. Theoretical Frameworks……………………………………………………………….16
Figure 2. Change in Mean Total Palliative Care Knowledge Score……………………………..63
Figure 3. Change in Intent to Enroll Family Member in Palliative Care………………………...63
Figure 4. Change in Intent to Enroll Oneself in Palliative Care…………………………………63

viii
ABSTRACT
Palliative care is specialized medical care that aims to provide comfort and supportive
care to seriously ill patients, irrespective of age and at any stage of their disease trajectories.
Unlike hospice care, palliative care and curative treatment can be provided parallel to each other.
Similar to hospice care, palliative care aims to alleviate pain and symptoms via a person-centered
care approach, with the primary aim of improving a patient’s quality of life. Despite evidence of
the effectiveness of various models of palliative care that are currently widely available,
awareness and access to this additional layer of support falls short, thus precluding many who
would benefit from this care from receiving it.
This dissertation sought to identify patient-level obstacles to engagement in palliative
care among community-dwelling adults and to test the efficacy of role model stories to improve
palliative care knowledge among community-dwelling older adults. Study 1 used a qualitative
research design and grounded theory approach to uncover paths forward to increasing palliative
care referral and enrollment among Medi-Cal patients in Los Angeles. Study 2 used a pretest-
posttest study design to determine the effectiveness of theory-driven role model video stories in
improving knowledge of palliative care among a diverse sample of adults aged 50 and older.
Study 3 also used a pretest-posttest study design to investigate how race concordance in health
messaging might affect changes in palliative care knowledge scores among English-speaking,
community-based adults aged 50 and older.
The analyses revealed that lack of palliative knowledge precludes all layers of society
from receiving potentially beneficial palliative care services. Further, it was found that the
authenticity of role model video stories critically and effectively aids in teaching a diverse older
adult population about palliative care, and positively changing intent to enroll in palliative care.
ix
Finally, while palliative care role model stories improved palliative care knowledge across the
board, the improvement is greater in race concordant groups, which holds true when considering
the changes in intent to enroll in palliative care.
In conclusion, there is a need to address the low palliative care health literacy among
community-based older adults, especially now that it is more widely accessible than ever before.
Given the numerous benefits that palliative care promises its patients and their families, or
caregivers, it would bode well for us to promote palliative care across all layers of society. The
favorable outcomes recorded in this dissertation offer hope for a public health approach that
remains true to the principles of patient autonomy. In this fragmented health care system, patient
advocacy is often a singular effort by the patient, for the patient, and therefore, with knowledge,
the patient is empowered to make informed decisions about their own medical care. This might
also compensate for physicians’ poor understanding of what a palliative care patient might look
like and address the misconception of palliative care perpetuated by health care professionals.
Alternatively, given that current approaches of educating health care professionals have been
underwhelming, expanding access to these videos among primary care physicians and specialist
clinics would be an important next step in research. Ultimately, it is imperative that patient
knowledge of palliative care is strengthened in order to ensure informed decision-making for any
and all community-dwelling individuals. Palliative care role model stories are one giant step
forward in this direction.
1
CHAPTER 1. LITERATURE REVIEW AND RESEARCH GAP
Definition of Palliative Care
Palliative care is specialized medical care that aims to provide comfort and supportive
care to seriously ill patients, irrespective of age and at any stage of their disease trajectories
(McInturff & Harrington, 2011). Unlike hospice care, palliative care and curative treatment can
be provided parallel to each other. Similar to hospice care, palliative care aims to alleviate pain
and symptoms via a person-centered care approach, with the primary aim of improving a
patient’s quality of life. Person-centered care is achieved by addressing total pain: physical,
mental, emotional, and social deficiencies, that the patient endures in the face of serious illness.
In order to achieve this goal, palliative care employs a team-based approach to care with each
evidence-based palliative care team comprising of at least a board-certified palliative care
physician, a nurse practitioner, and a social worker. The team may also include a chaplain or
spiritual counselor, and specialist therapists, such as occupational, physical, and respiratory
therapists, if deemed necessary by the health care provider or the patient.
Models of Palliative Care
In the United States (U.S.), there are essentially three primary models of palliative care
serving the various layers of society: (1) hospital-based or inpatient palliative care; (2)
outpatient/clinic-based palliative care; and (3) home and community-based palliative care
(HBPC).
Hospital-based or Inpatient Palliative Care
Of the three models, hospital-based palliative care has received the greatest attention, so
much so its prevalence across the country has remarkably increased in the last decade.
According to the Center to Advance Palliative Care (CAPC), as at 2019, more than 75% of states
2
in the U.S. report having palliative care programs in more than 60% of their hospitals, an
increase from only 43% of states reporting the same in 2008 (Morrison & Meier, 2019). Yet, the
growth is far from uniform. Geographically, less developed areas continue to lag behind their
more urban counterparts in the prevalence of hospital-based palliative care (p. 7). The New
England region, comprising of Connecticut, Maine, Massachusetts, New Hampshire, Rhode
Island, and Vermont, boasts 92.3% prevalence of hospital palliative care programs while in the
East South Central region, comprising of Alabama, Kentucky, Mississippi, and Tennessee, only
48.2% of hospitals have palliative care programs (p. 7).
There also is a difference in the growth of hospital-based palliative care programs based
on the hospital's size and its tax status. More than three quarters of all hospitals with 300+ beds
across all regions offer palliative care programs (p. 13). In hospitals with 151 to 300 beds, only
the West South Central region (Arkansas, Louisiana, Oklahoma, and Texas) reported less than
50% prevalence of palliative care programs. Among hospitals with 50 to 150 beds, only the East
South Central and Mountain (Arizona, Colorado, Idaho, Montana, Nevada, New Mexico, Utah,
and Wyoming) regions reported less than 50% prevalence of palliative care programs. Across all
regions as well, for-profit hospitals lag behind public and nonprofit hospitals in offering hospital-
based palliative care services.
Outpatient/Clinic-based Palliative Care
Outpatient palliative care, also known as clinic- or office-based palliative care, primarily
caters to patients with serious chronic illnesses who are community-dwelling and do not qualify
for hospice care as they are not yet approaching the end of their disease trajectories. This
includes patients with cancer-related diseases, Alzheimer’s disease and related dementias,
congestive heart failure, chronic obstructive pulmonary disease, liver disease, and/or kidney
3
disease. These diseases have trajectories that can be challenging for anyone, with pain and other
symptoms adding to the burden of disease. With older adults, sensory, functional, and mobility
declines or impairments further add to the challenge of managing pain and symptoms, thus
making outpatient palliative care ideal as an additional layer of support to patients, including
those who are actively undergoing treatment for a serious illness. Despite its promise, the
growth of outpatient palliative care has not matched that of inpatient palliative care. Some of its
major challenges include securing personnel, space, logistical support, and the lack of an
appropriate reimbursement model (Cassel et al., 2015; Meier & Beresford, 2008).
Home- and Community-based Palliative Care
Home- and community-based palliative care (HBPC) is interdisciplinary care that
provides an additional layer of care to community-dwelling patients, with the express purpose of
improving the patient’s quality of life, via in-home visits. In other words, HBPC is provided in
the patient’s private residence or in long-term care settings. Under this model, members of the
palliative care team take turns to visit the patient at home, including the palliative care physician.
HBPC does not replace any of the patient’s physicians but rather, provides complementary care.
It is not unusual for visits to primary care physicians and specialists to decrease though, in part
because palliative care helps patients manage their pain and symptoms, hence reducing the need
to visit the emergency department, or be committed in a skilled nursing facility (Brumley et al.,
2003). Generally, the HBPC team includes a palliative care physician, nurse practitioner, and a
social worker. Some patients have also accepted or requested for visits from a spiritual
counselor and other specialist therapists.
Another advantage of HBPC is the unprecedented access into a patient’s everyday
environments and greater access to family members or primary caregivers (Kamal et al., 2013).
4
This provides opportunities to the HBPC team to provide education and training to patients and
family members, or caregivers, on pain and symptom management including managing
medications as well as crisis management. This access provides the HBPC team a wealth of
information on the social infrastructure surrounding the patient and enhances their ability to
make the best decisions for the patient. Often, it is the daily routine that we take for granted,
such as taking the trash out, that may be most burdensome on the patient but is easily tackled by
the social worker. Additionally, seriously ill older adults who live alone are at greater risk of
having to move to a skilled nursing facility (Lage et al., 2018). HBPC team home visits bode
well for this segment of older adults as it helps the patient continue to remain at home unless and
until it is absolutely no longer safe to do so.
Evidence of Palliative Care Effectiveness
Since its inception, studies on palliative care have shown numerous benefits, including in
the key areas of pain and symptom management. According to meta-analyses of studies
spanning a 40-year period, pain was prevalent in more than 50 percent of cancer patients (van
Den Beuken-van Everdingen et al., 2007). A more recent systematic review and meta-analysis
conducted by Van Lancker et al. (2014) revealed that of 32 symptoms older cancer patients
reported having, pain was among the top five symptoms with a pooled prevalence of 66.3%
(95% CI: 35.8%–83.9%, I
2
: 16.6%). Similarly, a review on pain prevalence among patients with
chronic obstructive pulmonary disorder (COPD) found that between 32% and 60% reported
having pain (van Dam van Isselt et al., 2014), while among patients with heart failure, 23% to
75% reported having pain (Godfrey et al., 2006). Other physical symptoms often accompanying
serious illness include nausea, vomiting, breathlessness or dyspnea, incontinence, constipation,
fatigue, and loss of appetite (Van Lancker et al., 2014). Numerous studies have shown the
5
effectiveness of palliative care in addressing pain and symptoms among seriously, chronically ill
patients (Harding et al., 2005; Modonesi et al., 2005; Strasser et al., 2004; Zimmermann et al.,
2014).
It is not uncommon for seriously ill patients to have anxiety, including among older
adults. Nor is it unusual for them to report depressive symptoms over the course of their
illnesses (Akechi et al., 2004; Elkington et al., 2004; Moussavi et al., 2007; Shaffer et al., 2017;
Van Lancker et al., 2014), stemming from the loss of functional health, sense of purpose, and/or
sense of control (Jang et al., 2006; Yang, 2006). Prior studies have reported pooled prevalence
rates of major depression ranging from as low as 12.4% to as high as 27.0% among seriously ill
patients (Brintzenhofe-Szoc et al., 2009; Mitchell et al., 2017; Mitchell et al., 2011). This is
important because of the detrimental effects on health that accompany depression (Moussavi et
al., 2007; von Leupoldt et al., 2011). Furthermore, anxiety and depressive symptoms can afflict
family members as they assume their caregiver roles (Shaffer et al., 2017), with greater effect
observed on those who juggle between the responsibilities of employment and caregiving (Given
et al., 2004). Palliative care has demonstrated its effectiveness at assisting both patients and
caregivers to moderate the adverse impact of anxiety and depressive symptoms on their quality
of lives and health outcomes. While a study on routine palliative care-led meetings for family
caregivers showed the unintended effect of causing greater posttraumatic stress disorder
symptoms (Carson et al., 2016), there is greater evidence demonstrating reduced anxiety and
depressive symptoms for both patients and caregivers (Temel et al., 2017; Temel et al., 2010;
von Heymann-Horan et al., 2018).
Very often, the pain and symptoms accompanying a serious illness gravely affect a
patient’s quality of life (Brenes, 2003; Juenger et al., 2002; Lee et al., 2005; Yohannes et al.,
6
1998). This is worse among older adults who report multiple morbidities and consequently,
poorer quality of life (Banerjee, 2015; Salive, 2013). Palliative care has been shown to benefit
patients such that they report improved quality of life (Diop et al., 2017; El-Jawahri et al., 2016;
Gaertner et al., 2017; Hoerger et al., 2019; Kassianos et al., 2018). Palliative care has also been
shown to improve patient’s perception of the quality of care (Roza et al., 2015). Parallel to
reports of improved quality of life and perceived quality of care, medical service use such as
emergency department visits also decreased among patients receiving palliative care, and as an
extension, palliative care patients recorded lower costs of care (Brumley et al., 2007; Diop et al.,
2017; Enguidanos et al., 2012; Gomes et al., 2013; Scheerens et al., 2020).
In a review of home-based palliative care (HBPC) studies, Gomes et al. (2013) found that
patient satisfaction with care received was high. Compared with usual care, HBPC fulfilled
patient wishes including dying at home and not in hospitals; relieved pain over the disease
trajectory, including in the last two weeks of life; and somewhat reduced symptom burden that
accompanies serious illness.
Consumer Awareness of Palliative Care
Despite all its proven benefits, palliative care is still underutilized in the U.S. and one of
the biggest obstacles to palliative care receipt for seriously ill patients and their families is the
lack of knowledge. In 2011, the Center to Advance Palliative Care (CAPC), a national nonprofit
organization and leader in the palliative care movement, commissioned a public opinion poll to
determine levels of awareness about palliative care among consumers in the United States. At
the time, consumer awareness and understanding was relatively low, whereby 70% of consumers
polled were not knowledgeable at all about palliative care (McInturff & Harrington, 2011).
7
In 2019, a similar poll found that consumer awareness about palliative care has remained
relatively unchanged. Yet, a change in the study design illuminated that patients and caregivers
demonstrated greater familiarity with palliative care than other consumers (Meier & Morgan,
2019). In another study using a nationally representative sample, 34% of participants gauged
themselves as somewhat knowledgeable about palliative care but the majority of them (59%)
could not accurately answer three basic questions about palliative care (Zhu & Enguídanos,
2019). Additionally, palliative care is often mistaken for hospice care or end of life care
(Kavalieratos et al., 2014), a gross inaccuracy.
On the other hand, health care professionals and especially physicians, also lack
awareness about palliative care (Enguidanos et al., 2020; Meier et al., 1997). Too often, health
care providers mistake palliative care for end-of-life care, or hospice care (Aldridge et al., 2016;
Enguidanos et al., 2020; Grudzen et al., 2013). In the CAPC survey, physicians were asked what
specific criteria they use when considering palliative care referrals (Meier & Morgan, 2019).
Findings from that study suggest physicians could be part of the problem in palliative care: they
typically considered palliative care for their patients when faced with an incurable, untreatable,
and terminal illness. This is problematic as patients usually expect their physicians to give them
medical advice or choices because they do not want the full responsibility of such decisions
(Levinson et al., 2005; Vertinsky et al., 1974). In other words, the physician’s lack of knowledge
about palliative care may preclude their patients from receiving supportive care that they can
benefit from.
Interestingly, the use of appropriate language can change people’s understanding,
perception, and therefore, acceptance of palliative care. Perhaps another reason for low
consumer awareness of palliative care stems from the language used to describe it as it carries a
8
persistent negative connotation among the misinformed. Fadul et al. (2009) conducted a study
with medical oncologists and midlevel providers testing the impact of changing palliative care to
supportive care. Of the 140 participants, 57% expressed preference for the term supportive care
over palliative care, and they were more inclined to refer their patients to supportive care than to
palliative care (Fadul et al., 2009). A separate study also reported an increase in palliative care
referrals following the name change from palliative care to supportive care (Dalal et al., 2011).
Additionally, patients in this study were referred to palliative/supportive care earlier in the
disease trajectory, which means they benefited from this additional layer of care for a longer
period before death (Meier & Morgan, 2019; Schenker et al., 2014).
Similarly, in the 2011 poll, CAPC tested the efficacy of a revised definition of palliative
care in changing people’s perception of palliative care. The phrase, serious illness replaced
advanced illness in the newer definition and as a result, the mean rating score for acceptance of
the new definition was higher by about 17.5% (McInturff & Harrington, 2011). This was
replicated in the 2019 poll and similar results were observed across all groups (Meier & Morgan,
2019). More importantly, after learning about what palliative care is, the majority of consumers
agreed that they would consider palliative care for themselves or for a loved one if either one
were seriously ill (Meier & Morgan, 2019). This finding was consistent across both waves and
across all groups.
Current Efforts of Increasing Palliative Care Awareness
The World Wide Web has become such a critical source of health information. In 2012,
40% of adults aged 18 and older and with no chronic conditions sought health information online
(Fox, 2014). The same study showed that 45% of those with one chronic condition and 39% of
those with at least two chronic conditions did the same. In fact, a survey by Pew Research
9
Center revealed that 72% of adult internet users turned to the Internet for health information,
especially on specific diseases and treatments (Fox, 2014). It is no surprise then that many have
turned to the Internet to disseminate health information. Additionally, the lack of palliative care
health literacy has caught the attention of the National Institutes of Health (NIH), as reflected by
the NIH Program Announcement for End-of-Life and Palliative Care Health Literacy (National
Institutes of Health, 2017).
At the end of 1997, there were at least 40 websites related to palliative care and hospice
care (Pereira & Bruera, 1998). Today, that number has very likely increased exponentially. A
simple search for “palliative care” displayed 21.0 million results. This begs the question about
the quality, reliability, and accuracy of palliative care information available online, and prompted
Claudio et al. (2018) to investigate. In a very simplistic search that examined only the top 10
results using the search term “What is palliative care” on Google and “palliative care” on both
Google and YouTube, it was found that most of the top search results were educational websites
and many were from credible sources such as the Center to Advance Palliative Care, the National
Institutes of Health, U.S. National Library of Medicine, and the American Academy of Hospice
and Palliative Medicine. Other sources were generally established websites such as WebMD,
The New York Times magazine, and The Atlantic Monthly. Overall, the study determined that
the websites were educational, informative, and had on-point messaging. YouTube videos were
also educational but boasted the additional personal element of a palliative care patient story.
In a more detailed examination of YouTube videos about palliative care, Liu et al. (2019)
had 833 videos in their search results when using “palliative care” as their keyword search. Of
these, they analyzed 84 that were in English, uploaded no more than 10 years prior, and no
longer than 6 minutes in duration for general public consumption. They found a mix of
10
informational videos and personal testimonies that were uploaded primarily by organizations
advocating for or providing palliative care services. Despite these videos largely dedicated to
educating people about palliative care, more than two thirds mentioned “end of life,” which is in
contrast to the primary goals of palliative care. The majority of protagonists were also health
care professionals and racially homogeneous. Parallel to findings by Claudio et al. (2018), Liu et
al. (2019) did note some personal stories were included in these videos but they were largely a
small, embedded segment of the video and almost never the protagonist itself.
Gaps in Current Approaches
Current approaches to increasing palliative care awareness have primarily been top-
down and directed towards either health care professionals or medical students (Alvarez & Agra,
2006; Li et al., 2021; Lloyd-Williams & Macleod, 2004; Shaw et al., 2010). Consumers have
generally been neglected, hence explaining why there is such a dearth of palliative care
knowledge among community-dwelling adults (Huo et al., 2019; McInturff & Harrington, 2011;
Zhu & Enguídanos, 2019). Yet, if palliative care is meant to benefit all layers of society, then it
is imperative that we develop educational materials that target the broader society. This includes
using language that is approximately a 6
th
grade reading level as opposed to many existing
websites that use language more appropriate for a 10
th
grade level (Claudio et al., 2018).
In order to have the widest reach, it is only natural that we turn to digital media to
disseminate palliative care information to older adults. Aside from the advantage of being
geographically borderless, the Internet is generally easy to use, even for older adults, as
evidenced by the 75% tech adoption rate within the 65 and older segment (Perrin & Atske,
2021). One may argue that older adults have not completely embraced technology, but that trend
has edged downwards over time (Anderson & Perrin, 2017) as a greater proportion of older
11
adults aged 65 and older report owning a smartphone (53%) and report spending more time with
their digital screens, up by 27 minutes daily between 2005 and 2015 (Livingston, 2019). Most
importantly though, older adults have shown tremendous ability to adopt technology in order to
access health information, provided they receive instruction in whatever skill necessary to access
health information (Xie, 2011).
In addition to the medium of the message, the mode plays an important role and first-
person storytelling has been both underutilized and understudied. As reported by Claudio et al.
(2018) and Liu et al. (2019), most of the videos featured health care professionals and neither
patient nor caregiver. While a conventional educational video may be effective in conveying
important information to consumers, storytelling is the bedrock of compelling human
communication because its persuasive power stems from evidence-based theoretical
mechanisms. This is a major component that ‘talking head’ videos on YouTube tend to lack,
thus diluting their possible impact beyond providing information. A scoping review revealed
that theoretically-driven first-person storytelling interventions have the ability to improve
attitudes, knowledge, health behaviors, and clinical outcomes (Lipsey et al., 2020). The
additional advantage of first-person storytelling is its ability to transcend race, education levels,
and socioeconomic status.
Effectiveness of Role Model Stories in Health Promotion Interventions
A role model story is a short, 3- to 4-minute video story, or vignette, on an individual
patient’s experiences while undergoing treatment or receiving a specific type of care. To
maintain authenticity, these videos are ideally filmed in the patient’s own home. The semi-
structured interview is then conducted, with the patient answering the questions unscripted. The
interviewer’s primary function is to guide the role model’s story without directly impacting the
12
story. This format, coupled with specific theoretical frameworks, has proven to be effective as a
public health intervention. The theory-driven role model stories approach has successfully been
applied in the areas of smoking cessation (Whittaker et al., 2011), HIV-prevention interventions
to reduce HIV infection rates (Berkley-Patton et al., 2009; Corby et al., 1996), to promote
positive health behaviors among at-risk society (Ranjit et al., 2015), and in increasing pap smear
and mammogram screening among ethnic minorities (Suarez et al., 1993).
Theoretical Frameworks
As expressed above, the guiding principles for the role model stories in this dissertation
are classic behavioral psychology theories: social learning theory and theory of reasoned action.
Social Learning Theory
Social Learning Theory (Bandura, 1977) posits that people learn from observation, by
imitating, and/or modeling after others (Figure 1). In other words, individuals will mimic role
models they have seen or observed with the incentive of reducing the likelihood of making
mistakes. This process can occur either in-person or via multimedia platforms. We used this
theory to guide our selection of role models, with the expectation that our patients will educate
themselves.
In line with this, the role model video stories featured a heterogeneous group of palliative
care patients in terms of race/ethnicity, gender, marital status, and health conditions. This is to
represent the differences in culture, education levels, beliefs, and health conditions of the
anticipated audience. In the palliative care role model video stories, the audience is poised to
observe and learn about the positive experiences of others who have received it.
Theory of Reasoned Action
13
The Theory of Reasoned Action (Ajzen & Fishbein, 1980) posits that individual
behaviors are determined by behavioral intention (Figure 1). The behavioral intention is
influenced by the individual’s attitude towards the new behavior itself as well as subjective
norms about the behavior. Attitudes are composed of beliefs about the positive and negative
impacts of the behavior, which are both utilized in the formation of the overall attitude toward
the behavior. Subjective norms are defined by how others in the social environment regard the
importance of the behavior including the importance of their opinion on that behavior to the
individual. Additionally, behavior can be modified provided the new behavior is ‘approved’ by
someone whom the individual deems important, such as a role model. Applying this framework
calls for a diverse set of stories with role models from all targeted ethnic backgrounds such that
consumers of the role model video stories will be able to relate to the role models.
For example, an individual may believe that home-based palliative care helps reduce
stress related to having a serious illness but that they must give up their other doctors to enroll.
These positive and negative beliefs are weighted unequally in the development for the general
attitude toward home-based palliative care. Individuals’ perceived social norms may be more
compellingly shaped by the opinion of their peers than by a physician’s recommendation, so
gaining the support of a family member or peer may be a more persuasive and convincing
influence. Attitudes and social norms predict intentions to enroll in home-based palliative care,
and individuals’ intentions are associated with their real behaviors.
Purpose of this dissertation
Informed by the above, the overall purpose of this dissertation is to identify patient-level
obstacles to engagement in palliative care among community-dwelling adults and to then test the
efficacy of role model stories on community-dwelling older adults. Many studies have identified
14
the lack of consumer knowledge as a major obstacle to accepting and receiving palliative care.
However, as described above, consumers who know what palliative care is, often express the
desire to receive it either for themselves or a loved one. Therefore, there is motivation to further
identify feasible approaches to engage community-dwelling adults in palliative care.
Acknowledging that most prior efforts have adopted a top-down approach, this dissertation also
attempts to challenge this norm by empowering community-based older adults with knowledge
about palliative care. We have seen that even health care professionals do not always have an
accurate understanding of palliative care and in such instances, they become the barriers to
palliative care referral and receipt among older adults. The rationale then is that the greater the
number of people who are informed consumers about palliative care, then the greater the demand
for palliative care. When consumer demand increases, this will likely persuade the right people
to educate themselves about palliative care. Finally, too often have we observed disparities in
health care that disadvantage ethnic minorities. This dissertation also seeks ways to reduce that
disparity by identifying possibly more effective ways to reach out to the underserved older adult
populations.
This dissertation is organized into five chapters. The first chapter presents the literature
review describing the problem of low palliative care awareness that this dissertation seeks to
address. The second chapter presents the results of a qualitative study to identify feasible paths
forward to promoting palliative care among all layers of society. The third chapter then presents
the results of the pilot study using role model palliative care patient stories to improve palliative
care knowledge among community-based older adults. The fourth chapter builds on the third by
exploring the impact of race concordance between the messenger and the consumer on palliative
care knowledge acquisition. The fifth and final chapter will present a summary of findings and
15
summative discussion about persistent challenges in palliative care enrollment and viable
approaches to reduce that gap across all layers of society.

16
Figure 1. Adapted model from Stiggelbout et al. (2006), based on Social Learning Theory and
Theory of Reasoned Action, Applied to Palliative Care Role Model Stories

SOCIAL INFLUENCE:
Subjective norms, social
support, modelling
SELF-EFFICACY
PAST
BEHAVIOR
ATTITUDE
toward
palliative care
INTENTION TO ENROLL
IN PALLIATIVE CARE
(SELF/FAMILY MEMBER)
ENROLLMENT IN
PALLIATIVE CARE
DEMOGRAPHIC FACTORS
+
PALLIATIVE CARE ROLE MODEL STORIES
17
CHAPTER 2. IDENTIFYING PATHS FORWARD: EXPANDING PALLIATIVE CARE
TO SAFETY-NET PATIENTS IN CALIFORNIA
Introduction
More than a decade ago, the first randomized trial of home-based palliative care (HBPC)
demonstrated clear evidence of this program’s effectiveness in increasing patient satisfaction
while reducing costs of care (Brumley et al., 2007). Despite these findings and findings from
similar, subsequent studies (Calton et al., 2017; Cassel et al., 2016; Cunningham et al., 2016;
Gomes et al., 2013; Gonzalez-Jaramillo et al., 2020; Lustbader et al., 2017; Paramanandam et al.,
2020; Wang et al., 2019), widespread access to HBPC has been hindered by lack of funding
mechanisms for this care model (Aldridge et al., 2016; Bowman et al., 2019).
In January 2018, California’s Senate Bill 1004 (SB 1004) took effect. Under SB 1004,
California’s Medicaid (Medi-Cal) managed care patients of any age have access to home- and
community-based palliative care services if they meet general and disease-specific eligibility
criteria. The general eligibility criteria targets Medi-Cal patients diagnosed with congestive
heart failure (CHF), chronic obstructive pulmonary disease (COPD), advanced cancer, and/or
liver disease who:
1. Visit the emergency department to manage symptoms accompanying advanced disease,
2. Are either ineligible for or do not want to enroll in hospice,
3. Have approximately one year to live,
4. Is not in “reversible acute decompensation,”
5. Agree to both opt for primarily home-based or outpatient disease management/palliative
care and participate in advance care planning discussions, and
6. Meet other disease-specific eligibility criteria.
18
(California Health and Human Services Agency, 2018)
Initial analysis of Medi-Cal claims and death data showed a sizable population would be
eligible for SB 1004 services (Department of Health Care Services, 2015). In the two years
following enactment of SB 1004, fewer than 1% of all Medi-Cal patients were enrolled in home-
and community-based palliative care programs (Department of Health Care Services, 2015), a
rate that raises concerns SB 1004 is underutilized. Also concerning is that many of those
referred to palliative care are either not enrolled or not enrolling themselves. In 2018, of the
5,813 Medi-Cal patients who were referred under SB 1004, approximately 49% did not enroll in
palliative care (Department of Health Care Services, 2020b). In 2019, a slight improvement was
observed yet, 38% of the 8,116 Medi-Cal patients referred under SB 1004 remained unenrolled
(Department of Health Care Services, 2020b).
This represents a fairly large, underserved segment of the safety net population to whom
a service is readily available. Given this service gap, this study sought to identify paths forward
to increasing HBPC referral and enrollment among Medi-Cal managed care patients.
Understanding patient-level obstacles to engagement is critical to improving this population’s
receptiveness and access to palliative care services.
Methods
We conducted an exploratory, qualitative study. Individual in-person interviews were
conducted with Medi-Cal managed care patients. This study was approved by the Institutional
Review Board of the research university.
Participant Recruitment
Between March and June 2019, we recruited study participants from Los Angeles area
public hospitals and community-based sites, such as retirement communities. Using purposive
19
sampling, we recruited English-, Spanish-, and Chinese-speaking patients. Only Medi-Cal
managed-care-plan patients were invited to participate. Each participant received a $30 gift card
in appreciation for their time.
Interview Protocol
The principal investigator (PI) and the co-investigator developed the interview protocol
(Table 1), with review and input from California palliative care policy experts. The open-ended
questions sought to elicit information about the participants’ knowledge of palliative care, their
perceptions of palliative care, and participants’ preference for communications about palliative
care services. Interview protocols were translated into Spanish and Chinese.
Procedures
Trained research assistants (RAs) and program staff conducted the interviews. Potential
participants were screened for their ability to speak English, Spanish, or Chinese. Next, we
confirmed the individual’s enrollment in a Medi-Cal managed care plan. Eligible individuals
were then invited to participate in the study. Interviews were conducted within public settings
but in locations deemed comfortable by the participant. Interviewers read the information sheet
to the participant and then obtained verbal consent. All interviews were audio tape-recorded and
transcribed verbatim. Non-English interviews were then translated, transcribed, and reviewed
for accuracy by a second RA.
Analysis
Two RAs (DH, YW) independently conducted open coding of the transcripts using a
grounded theory approach. The RAs first independently reviewed four transcripts. Working
from the first transcripts, the RAs then iteratively developed a codebook with a list of explicitly
defined codes and a concrete example of each code taken from these first four transcripts
20
(Creswell, 2014) to mitigate any coder error. The RAs then coded the remaining transcripts and
met to reconcile their coding until they agreed upon 95% of the codes. Disagreements or
uncertainties between the RAs was resolved by the PI. Codes were subsequently analyzed and
grouped under broader themes. We analyzed demographic data using Stata SE version 14.0
(StataCorp, 2015) to describe the study sample.
Results
Sample
We interviewed a total of 27 patients. Interviews averaged 20 minutes in length. Twenty
interviews were conducted in English, two in Spanish, and five in Mandarin Chinese. The study
participants ranged in age from 30 years old to 93 years old (Table 2), with a median age of 61
(M=62.8, SD=14.9). A little over half the participants were female (51.9%). More than a third
of the participants identified as Hispanic/Latino (37%), followed by Black (26%), Asian (19%),
White (15%), and other race (4%). Most participants were single or never married (41%),
followed by married (22%) and divorced (15%), with the remainder split evenly between
widowed (11%) and separated (11%). More than half the sample had at least graduated from
high school (55.5%).
Themes
In this explorative study, we identified four themes that lend themselves to charting paths
forward in the expansion of palliative care to Medi-Cal patients. These themes are lack of
palliative care literacy, self-perceived patient need, facilitators for engaging in palliative care,
and potential barriers to engagement in palliative care within the Medi-Cal population.
Lack of Palliative Care Literacy.
21
The vast majority of patients (85%) had not heard of and did not know what palliative
care is. As one patient (#11) said, “I don’t understand what it is, what the terminology is.” Two
patients alluded to having heard about palliative care, but neither could correctly define palliative
care while one patient conflated palliative care with hospice care. The latter (#28) said: “…when
I [saw] that palliative care, I thought, ‘Oh, must be terminal.’”
Self-Perceived Patient Need.
In most instances (85%), when patients were given the definition of palliative care, they
were immediately receptive to it. However, among those who were less receptive, two of them
expressed more pragmatic approaches to their serious illnesses, including leaving it to God. One
of them (#20) said, “…I already prepared for the future. When God calls, I’ll follow God.”
In other instances, seriously ill patients did not feel debilitated enough to want or need
palliative care yet. One such patient (#17) reported, “So I'd have to really see the condition’s
failing, for me to want to accept that I would need it. … Yeah, cause I'm still kind of young.”
Another patient with COPD (#22) echoed, “…my medical condition is not severe enough to have
this service.”
Facilitators for Engaging in Palliative Care.
Providers as Referral Sources. All patients generally reported positive interactions with
their doctors, and all but four said they want to learn about palliative care services from their
doctors. One patient (#7) noted, “If [my doctor] is referring me it’s because he must have
some … concerns and, must know that this program is good. … I’ve been with my doctor since I
was, what, 11 years old.” Medi-Cal patients indicated that they trusted their doctors to help
them. As one patient (#27) described, “Well who else am I going to trust? You know what I
22
mean? If I can’t trust them, forget it.” This comment also suggests that patients have a high level
of confidence in their physicians’ decision-making on their behalf.
Of note, a small number of patients expressed trust in other healthcare professionals, such
as social workers and nurse practitioners, as sources for healthcare-related information, including
palliative care. One patient (#3) stated that: “… nurses can advise you on what to do, or social
workers…”.
Timing of Receipt of Palliative Care Information. Most participants expressed a
preference for receiving information about palliative care at the time of or within days of
receiving a chronic or serious illness diagnosis. One patient (#24) said, “I don't want to wait and
keep me in suspense. I like to be told [about palliative care] right then.” Another patient (#27)
agreed: “I mean it’s like anything can happen to anyone at any time in their life. If I find out that
I have this condition, I would like to be told [about palliative care] right away so that we can
have everything under control from the beginning until I’m dying on the ground and it’s too
late.”
Potential Challenges to Engaging in Palliative Care
Culture and Language. Cultural and language differences within the Medi-Cal managed
care population, which is very diverse and includes many immigrants, may complicate
receptiveness to palliative care. One patient (#20), who had also been enrolled in hospice care,
described her discomfort with visits from the chaplain due to philosophical differences:
“Initially, I was polite. After they began asking too many questions … Something like, do you
have any arrangements or plans?...I feel so annoyed.”
Some participants identified language as a barrier to potentially receiving palliative care.
In some languages, there is no direct translation for the term “palliative care,” so interpretations
23
vary. One Asian patient (#19) said emphatically: “Wrong translation! Palliative [in Chinese] is
waiting for death! Bad translation! You must change this! I feel uncomfortable about this term!”
Language barriers also were identified as a barrier that limited participants’ access to
physicians of their choosing. A Spanish-speaking patient (#1) reported, “We went to the hospital
but there, they only spoke English. … they did not understand me, and I didn’t understand them.
I would tell them [or ask for] ‘an interpreter.’” Similarly, an Asian patient (#22) explained,
“Because of the language barrier, I’m not good at communication.”
Housing. In this study, 19% of participants raised the issue of homelessness and close to
41% identified as living in temporary housing. As one patient (#1) expressed, “I'm sometimes at
one place, sometimes in another place. …I don’t last well in one single place.” In a few other
instances, patients hesitate welcoming strangers into their homes for personal reasons. A patient
(#24) asked, “Does your house have to be clean?”.
Discussion
This study sought to identify paths forward to expanding palliative care services to a
safety-net population. We found four strategic targets to confront and address: lack of palliative
care literacy, self-perceived patient need for palliative care, facilitators for engaging in palliative
care, and sociodemographic barriers to engaging in palliative care.
The lack of palliative care literacy is well-documented in several nationally
representative studies in the last decade (McInturff & Harrington, 2011; Zhu & Enguídanos,
2019). The uniqueness of this study lies in the population sampled. Little attention has been
paid to the vulnerable, urban safety-net population, which further comes with its own unique set
of challenges. Despite state-level legislation supporting the provision of palliative care to this
population, awareness and access to this additional layer of support falls short, thus precluding
24
many who would benefit from this care from receiving it. In our study, among the few who had
heard of palliative care, only one seemed to have an accurate understanding of palliative care
while the others expressed inaccuracies or had mistaken hospice care for palliative care. In other
instances, Medi-Cal patients assumed that palliative care is only meant for much older adults or
for incapacitated patients with serious illness, thus precluding them from receiving this
additional layer of support.
To further complicate matters, Medi-Cal beneficiaries comprise primarily non-white
patients (Department of Health Care Services, 2020a). As of August 2020, at least 68% of Medi-
Cal certified-eligible patients were ethnic minorities and 37% of all Medi-Cal beneficiaries
reported a language other than English as their primary language (Department of Health Care
Services, 2020a). Los Angeles County, California’s largest county, has about 12 languages that
are relatively commonly spoken within its geographic region (Department of Health Care
Services, 2014). Language challenges are further exacerbated by the fact that, in some
languages, the term palliative care neither exists nor is distinguishable from hospice care.
Cultural barriers add to existing woes and hinder segments of the population from accessing
palliative care, specifically HBPC. A proposed strategy to tackle this issue is for healthcare
providers to describe palliative care services, as opposed to defining them, when introducing
palliative care to Medi-Cal beneficiaries. This strategy is in keeping with the preference,
expressed by participants in this study and in other research, that primary care providers
introduce and refer patients to palliative care (Rahman et al., 2018).
The segment of Medi-Cal patients that is homeless or that live in temporary housing will
likely be difficult to serve. Without a permanent address, providing quality HBPC will be
challenging. Special effort must be made to collaborate with community partners that regularly
25
serve these populations. Although this study has a disproportionate number of patients who
reported being sheltered homeless, in reality, it is not unusual for this population to exhibit
transient characteristics. Additionally, several patients expressed reluctance to accept HBPC
because they resisted having strangers inside their homes. Efforts to overcome this via effective
communication and building a lasting relationship with them individually can go a long way in
increasing the odds of palliative care acceptance, including HBPC.
Limitations
While SB 1004 covers the state of California, this study was conducted only among
Medi-Cal managed care managed care patients within Los Angeles. One may also argue that the
findings from this study are not generalizable. However, this study is unique, in that it provides
insights into different segments of the safety net population, including the transient population,
those in highly urban settings, and the ethnically diverse.
Conclusion
Numerous studies have echoed the same message: people who are informed about
palliative care say they want it (McInturff & Harrington, 2011; Zhu & Enguídanos, 2019). This
study established these similar patterns within the safety-net population in Southern California.
However, this study also identified several conditions that, while not unique to this population,
demand critical examination when laying out plans for expanding palliative care to this
population, particularly HBPC. The socioeconomic challenges in providing care to Medi-Cal
managed care members may be intensified when engaging in palliative care communications,
referrals, and services. Studies are needed to identify best practices in engaging these diverse
populations in palliative care.
26
Table 1. Patient semi-structured interview protocol

1. Please tell me what you know about palliative care.
2. Based on this information, tell me how you would feel about receiving this type of care in
your home if you needed extra support.
3. What information about this service would you want to know before you decide to accept
this service?
4. How would you like to be told about these services? Or that you may qualify for these
services?
5. Would it be okay if a case manager or an outreach worker told you about this service? These
individuals work with your healthcare team to look for services that may benefit you.
6. When you need information about your health where do you go to get new information about
healthcare or a new healthcare program?
7. Since this program is still new, sometimes doctors might not know about it. How else do you
think we can tell patients about this care?
27
Table 2. Sample Characteristics (N=27)
Characteristic n (%)
Age range (Mean; SD), years 30 – 93 (62.8; 14.9)
Female 14 (51.9)
Race
White 4 (14.8)
Black 7 (25.9)
Hispanic 10 (37.0)
Asian 5 (18.5)
Other 1 (3.7)
Marital status

Married 6 (22.2)
Divorced 4 (14.8)
Separated 3 (11.1)
Widowed 3 (11.1)
Single/Never married 11 (40.7)
Education, years
<= 8
th
Grade 5 (18.5)
Some High School 7 (25.9)
High School Graduate 7 (25.9)
Some College 3 (11.1)
College Graduate 5 (18.5)
Employment Status
Full-time 2 (7.4)
Part-time 2 (7.4)
Unemployed 13 (48.1)
Retired 10 (37.0)
Health conditions
Cancer 9 (33.3)
Lung Disease 9 (33.3)
Heart Disease 7 (25.9)
Liver Disease 2 (7.4)
Diabetes 12 (44.4)
Arthritis 9 (33.3)
28
Table 3. Themes and Definitions for Patient-Identified Barriers
Themes Definitions Example Quote
Lack of
Palliative Care
Literacy
• No knowledge of nor familiarity with
palliative care.
• “Palliative is um, like heart disease, no?” – Patient #4
• “These words – palliative care – I don’t understand these
two words.” – Patient #22
• Mistakes palliative care for hospice care. • “So is this hospice?” – Patient #23
Self-Perceived
Patient Need
• Patient does not feel palliative care is
necessary for her/him
• “I don’t need PC! I have had this medical condition for
three years. I have been hospitalized for five times.” –
Patient #19
Facilitators for
Engaging in
Palliative Care
• Providers as referral sources • “I think that … your doctors should advise you, you know.
The doctors are the ones that see us the most.” – Patient
#17
• “[The social worker has] helped me a lot for learning
more and to advise me and learn more about my
problems.” – Patient #9
• Timing of receipt of palliative care
information
• “Well, practically, right after I am explained about the
disease, I would like to get the information, you
understand me? It is here where, where they see fit those,
those with this program.” – Patient #9
Potential
Barriers to
Engagement in
Palliative Care
• Cultural norms exclude end-of-life-related
discussions.
• “Palliative is waiting for death!! Bad translation!! You
must change this!! I feel uncomfortable about this
term!!!” – Patient #19
• Language barriers require an interpreter if the
healthcare professional does not speak their
native language
• “Because I only speak Cantonese and Chinese, I only go
to see the doctors who can speak these languages.” –
Patient #21
• Housing • “I don't [know] what my living situation… I don't even
know if I'm going to be around here” – Patient #10
• “…sometimes I tidy up here and make a mess over there
and I feel bad if they see my mess.” – Patient #3
29
CHAPTER 3. THEORY-DRIVEN ROLE MODEL STORIES IMPROVE PALLIATIVE
CARE KNOWLEDGE AMONG A DIVERSE OLDER POPULATION
(Accepted author version, published in Palliative & Supportive Care)
Introduction
About 20 years ago, palliative care programs emerged across the United States as
separate and independent programs from hospice. Since then, these programs have continued to
spread in hospitals, outpatient clinics, cancer clinics as well as through community-based
programs, albeit this growth has not been uniform (Morrison et al., 2011). While availability of
palliative care services has expanded, accessibility to palliative care remains a barrier,
particularly among underserved populations that are financially challenged and geographically
isolated (Morrison et al., 2011). That said, the spread of palliative care was most likely fueled by
numerous studies documenting that with palliative care, seriously ill patients and their families
reported fewer emergency department visits, less pain, fewer depressive symptoms, improved
satisfaction with health care, and both better self-reported quality of life as well as quality of care
(Cunningham et al., 2016; Davis et al., 2015; Gade et al., 2008; Zimmermann et al., 2014).
Despite the growth in palliative care programs, and in spite of its measured benefits for
seriously ill patients and their family members, barriers to palliative care enrollment remain.
Knowledge of palliative care, for both patients and health care providers, is one of the greatest
barriers to receiving palliative care. A national study conducted by the Center to Advance
Palliative Care (CAPC) found that 8% of surveyed consumers are knowledgeable about
palliative care (McInturff & Harrington, 2011). Additionally, studies have found similar lack of
knowledge and misconceptions of palliative care among physicians (Aldridge et al., 2016). In a
survey of physicians, nearly one-third (29%) reported palliative care to be the same as hospice
30
(Snyder et al., 2013), which contributes to lack of or late referrals to palliative care (Scibetta et
al., 2016; Wadhwa et al., 2018). Thus, patients cannot rely on physicians to provide consistent
and timely referral to palliative care.
The tremendous need for palliative care education is clearly illustrated by study findings
that consumers who were informed about palliative care were more likely to want access to it,
either for themselves or for a seriously ill loved one . There has not been a uniform or national
effort to provide widespread consumer education on palliative care. Complicating things further,
there is not a standard definition of palliative care, although CAPC has made tremendous efforts
to promote consistent language (McInturff & Harrington, 2011, p. 8). In addition to the
challenges of consistent definition is the method in which palliative care is defined. In a recent
review of YouTube palliative care educational videos (Liu et al., 2019), investigators found that
most videos that aimed to increase knowledge about palliative care employed a top-down
approach, with nearly two-thirds of videos using a physician or a nurse protagonist. Only 15.5%
of the protagonists were palliative care consumers. Moreover, the vast majority (> 90%) of
protagonists were white. Given the extensive documentation of ethnic disparities in access to
end of life care (LoPresti et al., 2016), and potential distrust of the health care system among
some ethnic groups (Gardner et al., 2018), alternate palliative care educational approaches are
needed.
Stories have been found to resonate better with audiences and overcome ethnic disparities
as it is easier to identify with a storyteller, aided by the emotional appeal of the personal stories
(Bekker et al., 2013; Goddu et al., 2015). More importantly, the affect of stories and their ability
to connect through identification with the storyteller was found to be capable of creating shifts in
knowledge and behavioral intentions (Murphy et al., 2013). Further, the use of patients as their
31
own narrators or storytellers has been found to be an effective strategy for communicating health
information (Berkley-Patton et al., 2009; Bokhour et al., 2016; Reininger et al., 2010). In fact, a
study examining the effectiveness of a brochure of African American hospice role model stories
found that, after reading the brochure, older African American adults had improved knowledge
of hospice services as well as high intentions to enroll in hospice care should the need arise
(Enguidanos et al., 2011). Thus, role model stories may be an excellent source for increasing
public awareness and understanding of palliative care.
Despite its effectiveness in improving knowledge, role model stories disseminated in the
form of brochures have limited influence as they are bound geographically, incur significant
printing costs, and exclude people who have low literacy or are illiterate and who may have
certain physical impairments, such as low vision. Role model video stories widely available on
the Internet could potentially address most of these limitations. Internet use among older adults
continues to rise: as at 2019, an estimated 88% of adults aged 50 to 64 and 73% of adults aged
65 or older reported using the internet (Pew Reseach Center, 2019). Furthermore, 70% of adults
aged 50 to 64 and 38% of adults aged 65 and older reported using YouTube (Perrin & Anderson,
2019), with 68% and 46% of adults in the 50 to 64 and 65+ age groups, respectively, using
Facebook (Perrin & Anderson, 2019). This suggests that older adults are comfortable using
social media, including consuming videos online. In light of that, the purpose of this study was
to determine if videos of theory-based role model stories alongside clear palliative care
definitions (McInturff & Harrington, 2011) are effective in increasing consumer knowledge of
palliative care and intention to enroll in palliative care, should participants have a future medical
need.

32
Methods
Theoretical Framework
This study is framed by two theoretical models that have been shown to be effective in
previous health promotion research (Corby et al., 1996; King et al., 2008; Reininger et al., 2010;
Suarez et al., 1993; Whittaker et al., 2008).
Social Learning Theory. Social Learning Theory (Bandura, 1977) states that people
learn from observation, by imitating, and/or modeling the actions or behaviors of others. In other
words, individuals will mimic role models they have seen or observed with the incentive of
reducing the likelihood of making mistakes. This observation process can occur either in-person
or via multimedia platforms. We used this theory to guide our selection of role models to also
mimic a more representative population by race/ethnicity, age, gender, marital status, and disease
condition to extend the likelihood of observers’ ability to relate to the individuals in the videos.
In the palliative care role model video stories, the audience was exposed to the concept of
palliative care and the role models’ experiences with this additional care through personal
storytelling.
Theory of Reasoned Action. The Theory of Reasoned Action (Ajzen & Fishbein, 1980)
posits that individual behaviors are determined by behavioral intention, which in turn is
influenced by the individual’s attitude towards the new behavior and subjective norms
surrounding that behavior. Attitudes are related to the positive or negative outcomes resulting
from, in this case, enrolling in palliative care. The role models’ iteration of the advantages, or
disadvantages, from receiving palliative care, shapes the consumer’s perceived subjective norms
about palliative care. In fact, the consumer’s attitude toward palliative care may be more
33
compellingly shaped by the opinion of the role models than by a physician’s recommendation,
particularly if the role model is someone with whom they can identify.
Intervention: Role Model Video Stories
Recruitment of video role models. Patients were recruited as role models through
hospice and palliative care service providers in California, Colorado, and Georgia. Patients who
were cognitively intact and enrolled in home-based palliative care were eligible to participate in
the interviews. Patients were approached by their palliative care providers who determined if the
patient was interested in participating. Once interest was confirmed, providers sought patient
permission to share their contact information with the principal investigator (PI). Next, the PI or
the project manager contacted each patient to explain the project, and when possible, patients
(and their family members) were provided with example videos to illustrate our project. Each
patient role model who participated in the project was given $500 for their participation. All
interviews and video-taping were conducted in the home of the patient. All patients agreed to
share their full names and were sent drafts of the videos for review prior to finalization. Patient
role models were purposefully chosen to represent diverse ages, races, and health conditions, in
line with Social Learning Theory.
Interview protocol and story development. We developed a semi-structured protocol
to elicit information about the role model’s personal background (general information about
them such as age, family background, place of birth, and current or previous employment
position), brief health history, and his/her attitudes, beliefs, and experiences related to palliative
care, following our theoretical model. Each interview was videotaped and subsequently
transcribed verbatim.
34
Video editing was guided by the principles of Theory of Reasoned Action; specifically,
when possible, we were careful to include segments illustrating individuals’ initial attitudes and
beliefs about palliative care, factors influencing their enrollment, and experience following
receipt of palliative care. Each role model video story was approximately 3- to 4-minutes long
as shorter videos have been found to have higher engagement, with videos 3 minutes and under
recording the highest and longest engagement (Guo, Kim, & Rubin, 2014). We also included in
all videos the definition of palliative care as defined by CAPC (McInturff & Harrington, 2011).
Study Design
A pretest-posttest design was used to test the efficacy of the role model video stories in
increasing participants’ knowledge of palliative care as well as to ascertain their intention to
enroll either themselves or a family member in palliative care services if ill. This study was
approved by the Institutional Review Board of the University of Southern California.
Study Sample Eligibility and Recruitment
Study participants were recruited from community centers, retirement communities, a
caregiver support group, and senior centers in the greater Los Angeles area. Individuals age 50
or older, English-speaking, cognitively intact, and able to view videos were eligible for the study.
Research staff contacted potential sites who assisted with subject recruitment by posting flyers
and reaching out to their clients. In 2018, 13 survey groups were held at 13 sites. Group
participation ranged from three to 22 participants.
Role Model Videos Viewed
We showed all participants three role model video stories. The first video was of an
older white woman (Mary) with chronic heart failure and her caregiver husband. In the video
she is shown with her oxygen tube and her pulse oximeter. The second role model (Dorothy)
35
was an older African American woman with heart disease who lived alone with her cat. The
third role model was a middle-aged white man (Ted) diagnosed with stage IV liver and bone
cancer.
Measures
We used the Palliative Care Knowledge Scale (PaCKS) which is comprised of 13
questions with a response set of true, false, and I don’t know (Kozlov et al., 2017). The PaCKS
has demonstrated test-retest reliability (Kozlov et al., 2017). We also included two questions on
intent to enroll in palliative care services that were modified from a previous study of intentions
to enroll in hospice care (Enguidanos et al., 2011). These questions were (1) If a family member
was extremely ill, I would consider enrolling them in palliative care, and (2) If I had a disease
that could not be cured, I would want to receive palliative care. Each question included response
options of yes, no, and I don’t know. Additionally, we included sociodemographic questions in
the survey.
After reviewing the study information sheet with participants, research assistants asked
participants to complete the pretest survey plus a demographic survey. Following completion of
the pretest survey, we showed participants the three role model video stories. We viewed the
videos in the same order throughout the study. Total duration of the videos was approximately
12 minutes. The participants then completed a posttest survey, repeating the same baseline
questions (minus demographics). At the end of the study, participants were given between $20
and $25, depending on their need to engage a temporary caregiver, in appreciation of their time.
Statistical Analysis
Descriptive statistics were employed to describe participant characteristics. A total
knowledge score was calculated by summing correct responses of items on the PaCKS. Change
36
in total knowledge score from pretest to posttest was analyzed using t tests. Using chi-square
test, we also examined the differences between intent to access palliative care for one’s self and
for a seriously ill loved one before and after watching the role model video stories. Regression
analysis was conducted to determine predictors of greater change in knowledge score. Analyses
were conducted using STATA version 14 (StataCorp, 2015).
Results
Sample Description
Our sample included 161 adults age 50 and older (Table 4). Ages ranged from 51 to 101
(M=76.3, SD=11.5). The sample was predominantly retired (72.7%) and female (72.1%). Just
over a third (34.2%) were widowed. The sample was very diverse; 51.6% were white, 25.5%
black, 8.7% Asians, and 8.7% Hispanic. Almost half of the sample received some college
education, and 47.8% were college graduates. In terms of annual incomes, just over half (53.0%)
earned less than $30,000. About 41.6% of the sample reported having at least two chronic
conditions. Prior to viewing the video, 41.0% reported that they had previously heard of
palliative care, while 24.2% reported knowing someone who received palliative care.
Knowledge and Intentions
At baseline the average score on the knowledge questions was 4.5 (SD=5.0), out of 13
possible questions. Mean knowledge scores significantly increased from pretest to posttest
(M=10.0, SD=4.0; t(126)= 12.0, p < 0.001). There was improvement among all 13 items in the
PaCKS (Table 5), with the largest improvement found in knowledge that palliative care is not
only for people who are in the last six months of life (164.3% improvement; p<0.001), that stress
from serious illness can be addressed by palliative care (149.0% improvement; p=0.001), and
37
that palliative care also seeks to address any psychological issues brought up by serious illness
(140.4% improvement; p=0.001).
There also was significant increase in intentions to enroll both oneself and a family
member in palliative care services should the need arise. At pretest, 36.0% of participants said
they would want to receive palliative care if they had a disease that could not be cured; this
increased to 73.3% at posttest after watching the three role model video stories (c
2
=7.8, p<0.01).
Similarly, at pretest 37.3% of participants would consider enrolling a seriously ill family member
in palliative care if needed, increasing to 78.3% at posttest (c
2
=7.5, p<0.01).
Regression analysis (Table 6) revealed that participants who believed the role models
were real people (b=2.6, SE=1.2, p<0.05) significantly predicted higher change in knowledge
scores, controlling for all other variables in the model. On the other hand, participants who had
prior knowledge of or experience with palliative care (b=–5.9, SE=0.8, p<0.001), had lower
change in knowledge scores, controlling for other variables in the model. Additionally, being
non-white (b=–3.6, SE=0.9, p<0.001) and widowed (b=–2.9, SE=1.1, p<0.01), as opposed to
being married, were significant predictors of lower changes in knowledge score.
Discussion
To our knowledge, this is the only study employing role model video stories to improve
patient knowledge about palliative care. Previous studies using videos targeting populations
with advanced or serious illness have focused largely on decision-making aids in advance care
planning (Volandes et al., 2011). Other studies employing videos have focused on improving
palliative care knowledge among surgical residents (Bradley et al., 2010). Given the overall lack
of knowledge of palliative care among both consumers and health care providers, the need to
increase awareness among consumers is critical. In this study we found that participants who
38
were exposed to 12 minutes of the three palliative care role model video stories demonstrated
significant improvements in their knowledge of palliative care. Equally significant was the
increase in behavioral intentions either to seek palliative care for themselves (increased by
107%) or to recommend palliative care to a family member (increased by 110%) with a serious
illness. Moreover, item by item analysis of the PaCKS survey demonstrated that there was
significant improvement in each item. Importantly, the item with the fewest correct responses at
baseline was the statement that palliative care is for those in the last six months of life; at pretest
only 26% of respondents answered this correctly, increasing at posttest to 69%, an increase of
165%. The belief that palliative care has similar requirements or is the same as hospice is a
growing problem. In a recent survey conducted in New York, the most common misconception
of palliative care was that it is care for those at end-of-life (Shalev et al., 2018). This
misconception could potentially result in barriers to palliative care, similar to those found with
hospice care.
The item with the lowest rate of improvement and the one with the least correct at
posttest was that “palliative care is designed specifically for older adults.” About one-third
(34%) responded correctly at pretest, increasing to 57% at posttest. This low rate of correct
responses may reflect the protagonists in the three videos shown. While one man was in his late
fifties, the other two role models were clearly older, with one (Dorothy) stating that she recently
turned 81 and that she is “getting old”. This finding speaks to the need to include a wider age
range of role model stories when developing these educational materials. Our collection
included a younger role model, however, in our efforts to be more broadly representative of
ethnicity and gender, we did not include the story of the younger role model in this study.
39
Additionally, the significant association between believing role models were actual
patients and the higher change in knowledge scores suggests that role models are engaging and
believable, and therefore are effective protagonists for palliative care educational materials.
More research is needed to determine if these videos would be equally effective in improving
physician knowledge and understanding of palliative care as well.
Limitations
This study has limitations. All participants were recruited in the greater Los Angeles area
and, in general, were highly educated. The sample also did not include non-English speaking
participants as our videos were only available in English. Additionally, this study was not
longitudinal and therefore could not test retention of palliative care knowledge or actual behavior
related to accessing palliative care.
Implications
Given the challenges in physician referrals, having alternative sources of information for patients
could provide an aid to physicians in providing this kind of education to their patients. Such
education could aid in narrowing the gap in knowledge and as an extension, potentially provide
consumers with access to additional support that may be beneficial to them, and their families,
during times of serious illness. Our findings support those of other health promotion efforts in
hospice awareness, obesity prevention, women’s health, as well as smoking cessation
(Enguidanos et al., 2011; Reininger et al., 2010; Suarez et al., 1993; Whittaker et al., 2008) and
suggest that palliative care role model video stories are an effective strategy to increasing
knowledge of palliative care and in correcting misconceptions about palliative care.
Mechanisms are needed to distribute and increase visibility of these palliative care patient stories
more broadly.
40
Table 4. Participant Demographics (N=161)
Frequency Percent
Age range (M, SD), years 51–101 (76.2, 11.5)
Gender
Female 116 72.1
Missing 1 0.6
Marital status
Single 44 27.3
Married 38 23.6
Divorced / separated 22 13.7
Widowed 55 34.2
Missing 2 1.2
Ethnicity
Caucasian 83 51.6
African American 41 25.5
Hispanic 14 8.7
Asian 14 8.7
Other 7 4.3
Missing 2 1.2
Education level
8
th
grade or less 6 3.7
Some high school 8 5.0
High school graduate 26 16.1
Some college 42 26.1
College graduate 35 21.7
Post graduate 42 26.1
Missing 2 1.2
Annual Income
Under $10,000 28 17.4
$10,000 – $19,000 34 21.1
$20,000 – $29,000 9 5.6
$30,000 – $39,000 13 8.1
$40,000 – $49,000 17 10.6
$50,000 or more 33 20.5
Missing 27 16.8
Work status
Work full-time 5 3.1
Work part-time 19 11.8
Unemployed 12 7.5
Retired 117 72.7
Missing 8 5.0
Number of chronic conditions
None 42 26.1
One only 41 25.5
2 or 3 52 32.3
4 or more 15 9.3
Missing 11 6.8
Heard of palliative care?
Yes 66 41.0
Missing 4 2.5
Know(n) anyone receiving palliative care?
Yes 39 24.2
Missing 5 3.1
41

Table 5. Responses to Knowledge Questions (N=161)

Knowledge questions
Pre Post Percent
Improved
% Correct
1 One goal of palliative care is to address any
psychological issues brought up by serious illness.
29.2 70.2 140.4
2 Stress from serious illness can be addressed by
palliative care.
30.4 75.8 149.0
3 Palliative care can help people manage the side effects
of their medical treatments.
37.3 75.8 103.3
4 When people receive palliative care, they must give up
their other doctors.
30.4 64.6 112.2
5 Palliative care is exclusively for people who are in the
last six months of life.
26.1 68.9 164.3
6 Palliative care is specifically for people with cancer. 39.1 75.2 92.1
7 People must be in the hospital to receive palliative care. 39.8 77.6 95.3
8 Palliative care is designed specifically for older adults. 34.2 57.1 67.3
9 Palliative care is a team-based approach to care. 41.0 80.1 95.5
10 One goal of palliative care is to help people better
understand their treatment options.
39.1 77.6 98.4
11 Palliative care encourages people to stop treatments
aimed at curing their illness.
32.3 68.3 111.5
12 One goal of palliative care is to improve a person’s
ability to participate in daily activities.
38.5 78.9 104.8
13 Palliative care helps the whole family cope with a serious
illness.
44.1 81.4 84.5

42
Table 6. Multilevel Regressions of Change in Knowledge Scores (b)
***p < .001, **p < .01, *p < .05

Model 1 Model 2 Model 3
Variable b (SE) b (SE) b (SE)
Age -0.07 (0.05) -0.06 (0.04) -0.04 (0.04)
Non-White -1.8 (1.1) -3.2 (0.9)*** -3.6 (0.9)***
Education (reference: More than 12 years)
Less than 12 years -0.4 (1.8) -2.1 (1.5) -1.9 (1.5)
Exactly 12 years 2.4 (1.3) 0.9 (1.1) 1.3 (1.1)
Female -0.6 (1.0) 1.5 (0.9) 1.6 (0.9)
Marital Status (reference: Married)
Divorced/Separated -0.5 (1.5) -0.8 (1.3) -0.4 (1.2)
Widowed -3.2 (1.3)* -2.8 (1.1)** -2.9 (1.1)**
Single -1.1 (1.3) -1.3 (1.1) -0.8 (1.1)
Have / Know someone who received
palliative care
-6.0 (0.8)*** -5.9 (0.8)***
Believe role model is real 2.6 (1.2)*

Constant 13.4 (4.1)*** 14.7 (3.4)*** 10.9 (3.8)**
R-squared 0.13 0.40 0.42
Adjusted R-squared 0.07 0.35 0.37
N 122 122 119
43
CHAPTER 4. DOES RACE MATTER? ASSOCIATIONS BETWEEN RACIAL
CONCORDANCE, IMPROVEMENT IN KNOWLEDGE, AND CHANGES IN INTENT
Introduction
Palliative care programs have expanded rapidly across the United States, particularly in
the last decade or so, but as in many areas of healthcare services, equitable access to palliative
care remains an ideal (Crawley et al., 2000; Smith et al., 2009). On the one hand, consumer
awareness of palliative care is very low. Numerous studies have shown that consumers lack
knowledge about palliative care and among those who report knowing what palliative care is, it
is not unusual for them to mistake palliative care for hospice care (McInturff & Harrington,
2011; Meier & Morgan, 2019; Shalev et al., 2018; Zhu & Enguídanos, 2019). On the other hand,
this is also due to the lack of knowledge and understanding about palliative care among health
care professionals who are able to refer patients (Ahmed et al., 2004). This implies that the onus
is on the patient to advocate for himself or herself, and request referral to palliative care from
their health care providers when the need arises, as studies also show that when consumers know
what palliative care is, they want it (McInturff & Harrington, 2011; Meier & Morgan, 2019).
Role model stories have been found to improve older adults’ knowledge of hospice and
palliative care (Enguidanos et al., 2011; Hoe et al., 2021). These studies found significant
improvement in knowledge using printed stories (Enguidanos et al., 2011) as well as video
stories (Hoe et al., 2021). Moreover, the palliative care role model videos found that the
authenticity of the role model, as they were actual patients, contributed to a greater improvement
in knowledge. These role model stories were also able to effect positive change in the
participants’ intentions to enroll a family member or themselves in palliative care, should they
find themselves needing palliative care.
44
However, there remains a wide disparity in access to palliative care among ethnic
minorities (Crawley et al., 2000; Smith et al., 2009). The barriers to palliative care access may
be systemic or cultural in nature and are exacerbated by poor physician-patient communication
(Biola et al., 2007; Walling et al., 2010; Walling et al., 2016). With the growing older adult
population and changing racial demographics, it is increasingly necessary and critical to adapt
health-related educational tools to improve a vastly diverse, community-based older adults’
knowledge about palliative care. More specifically, this study seeks to investigate whether or not
race concordance in health messaging will affect changes in palliative care knowledge scores
among English-speaking, community-based adults aged 50 and older.
Hypothesis 1: Race concordance is associated with improvement in palliative care knowledge
scale scores.
Hypothesis 2: Race concordance is associated with intent to enroll a family member in
palliative care when the need arises.
Hypothesis 3: Race concordance is associated with intent to enroll oneself in palliative care
when the need arises.
Methods
We used a pre/post study design to investigate differences in the efficacy of role model video
stories to increase participants’ knowledge of palliative care and to determine if race
concordance between the video role models and the viewers impacted change in palliative care
knowledge scores. This study defines race concordance as similarity in self-identified race of
the study participant with the self-reported race of the patients in the role model videos. There
were four specific study groups: Black role model-Black participant (BRM/BP); Black role
model-White participant (BRM/WP); White role model-Black participant (WRM/BP), and White
45
role model-White participant (WRM/WP). This study also sought to examine if racial
concordance was associated with difference in consumers’ intentions to enroll either themselves
or a family member in palliative care services given a serious illness.
Sample Eligibility
Study eligibility requirements included English-speaking individuals aged 50 or older who were
able to view videos and complete surveys independently, and who self-identified as either
African American/Black or White.
Sample Size and Power
A statistical power analysis was conducted to estimate the needed sample size, based on data
from the pilot study measuring the improvement in knowledge before and after the video
intervention (Hoe et al., 2021). The effect size was 1.1. Based on Cohen (1988) guidelines, this
effect size was large. Using a=0.05 and power=0.80, the estimated total sample size this study
required to detect the effect size of was approximately, N=24.
Thus, the initial aim was to recruit 80 White older adults and 80 Black older adults in-
person (Table 7). However, when COVID-19 led to the stay-at-home order being enforced in
California in the second quarter of 2020, in-person access to community-based older adults was
restricted, with about 25% of the data collection still remaining. Due to the unforeseen and
prolonged circumstances in relation to COVID-19, the study was moved to an online platform a
few months after it became apparent that the situation was neither going to improve nor change.
Using the online recruitment mechanisms (described below), we modified the study sample to
add 100 White and 100 Black older adults (Table 8). In both recruitment modes, the intent was
to show half of all White and half of all Black participants only White role model videos while
the other half is shown only Black role model videos. The total sample size for both in-person
46
and online recruitment was 418. However, 11 observations were dropped for not meeting the
study’s inclusion criteria and one participant whose gender identification was Other. Therefore,
the final analytic sample size was 406.
Recruitment
In-person Recruitment. Study participants were initially recruited from community
centers, retirement communities, and senior centers in the greater Los Angeles area. Each
participant was given a $20 incentive for their time. As per the study design, in this sample, the
combinations were determined ad hoc and purposively. More specifically, the Black role model
stories were used first, followed by the White role model stories with both Black and White
study participants. Unfortunately, the in-person data collection was disrupted due to COVID-19
in the midst of recruitment for the White role model stories group.
Online Recruitment. Following onset of COVID-19, we resumed participant
recruitment online using Amazon’s Mechanical Turk Worker (MTurk) and PrimePanels via
CloudResearch, formerly known as TurkPrime.com (Litman et al., 2017), a participant-sourcing
platform. Each online participant was paid an $8 incentive for their participation in the 30-
minute long study. The incentive was calculated based on the total time required to complete the
study and used a $15 per hour minimum wage benchmark. We exerted greater control in the
online sample by recruiting in four separate groups. As per the study design, one group of White
and Black participants were shown White role model videos while the other group of White and
Black participants were shown Black role model videos via the appropriate YouTube links
uploaded into Qualtrics. Eligibility criteria were applied in MTurk using its ‘qualifications’
function. For the Black sample, recruitment also was conducted via CloudResearch’s
47
PrimePanels platform as we did not receive enough responses from Black participants who met
the inclusion criteria on MTurk after running the Qualtrics survey for three weeks.
Procedures
In both in-person and online recruitment modes, participants were first screened for
eligibility and given the study information sheet, in which usage of the phrase “palliative care”
was withheld so as not to influence performance on the knowledge test. Next, study participants
were asked to complete the pretest. Subsequently, participants watched two role model videos.
Half of White and half of Black participants were shown one White male and one White female
role model video story. The other half of White and Black participants were shown one Black
male and one Black female role model video story. In order to ensure that online study
participants did not fast forward through the videos, specific code was written in Qualtrics to
ensure that participants could only continue the survey at the end of the two videos. Total
duration of each of the two Black and two White videos did not exceed 8 minutes. Immediately
after viewing the videos, study participants could proceed to the posttest survey that included the
same measures as the pretest. The pretest measures are explained further in the next section.
The posttest also included questions about the study participant’s intent to enroll a seriously ill
family member or themselves in palliative care. Upon completion of the study procedure, a
debrief was held for the in-person groups.
Outcome Variables
We used the validated Palliative Care Knowledge Scale (PaCKS) which is comprised of
13 questions with a response set of true, false, and I don’t know (Kozlov et al., 2017) to measure
palliative care knowledge (Appendix 1). The outcome variable, total posttest score, was created
by taking the aggregate for all the correct responses in the 13 PaCKS items at the posttest. We
48
also included two questions on intent to enroll in palliative care services that were modified from
a previous study of intentions to enroll in hospice care (Enguidanos et al., 2011), given a serious
illness. These questions were (1) If a family member was extremely ill, I would consider
enrolling them in palliative care, and (2) If I had a disease that could not be cured, I would want
to receive palliative care. Each question included response options yes, no, and I don’t know.
Independent Variables
The primary independent variable was race concordance. The four-level variable was
created to represent the following combinations: Black role model-Black participant (BRM/BP);
Black role model-White participant (BRM/WP); White role model-Black participant (RWM/BP),
and White role model-White participant (WRM/WP). The total pretest score was included to
control for pre-test status. This variable was calculated by taking the aggregate of all the correct
responses in the 13-item PaCKS at the pretest. We also included a second independent variable,
‘self-perceived authenticity of the role model,’ as measured by the statement, ‘The stories in the
video are about real people,’ with a response set of true, false, and I don’t know. This variable
was included as it was previously found to be a significant predictor in the change in total
palliative care knowledge score from pretest to posttest (Hoe et al., 2021).
Covariates
We also collected sociodemographic information in the survey, which included age
(years), gender (male/female), marital status (single, married/living with partner, widowed,
separated, divorced), highest level of education (8
th
grade or lower, some high school, high
school graduate, some college, college graduate, post graduate), annual income (under $10,000;
$10,000 - $19,000; $20,000 - $29,000; $30,000 - $39,000; $40,000 - $49,000; $50,000 or more),
current work status (work full-time, work part-time, unemployed, retired), number of chronic
49
conditions (0, 1, 2 or 3, 4 or more), frequency experiencing pain (never, once a month, once a
week, every other day, every day, more than once a day). Additionally, we asked about their
advance care planning practices, including living will completion (yes/no), election of a durable
power of attorney for health care (yes/no), and whether or not they had discussed their treatment
preferences if diagnosed with a serious illness (yes/no). All the above covariates were self-
reported. An additional covariate, mode of participation (online/not online), was also collected.
Statistical Analysis
First, we conducted bivariate associations between the outcome variable, total posttest
score, and all the covariates listed above. As total posttest score was not normally distributed,
non-parametric tests were used. We used Spearman’s rank correlation coefficient to test the
relationship between total posttest score and age. We used the Kruskal-Wallis H test for total
posttest score against the covariates with at least three independent groups, including marital
status, education, income, employment status, number of chronic diseases, and frequency of
pain. We also used the Wilcoxon-Mann-Whitney test for total posttest score against covariates
with two independent groups, including race, gender, participants with living wills, discussed
care preferences, those who had elected durable power of attorney for health care, mode of
participation in this study as well as participants who had heard of palliative care, knew someone
who had received or is receiving palliative care, and knew someone who had received or is
receiving hospice care. Confounding was assessed by adding variables in a one-by-one approach
in individual unadjusted models with the independent variable, race concordance. If the beta
estimate changed by more than 10%, the covariate was deemed to be a confounder.
Confounding was seen in total pretest score, age, education, gender, marital status, income,
employment status, self-reports of chronic disease and frequency of pain, living will completion,
50
having discussed care in serious illness, electing a durable power of attorney for healthcare,
mode of participation as well as variables related to prior knowledge about palliative care. As
such, all these variables were included in the final linear regression model. Additionally, to test
for a race concordance effect, we used the multivariate Wald test to simultaneously test all three
study group combinations. Further, we used Fisher’s exact test to test the relationship of intent
to enroll a family member in palliative care at pretest against posttest, and stratified by race
concordance. We repeated the test for intent to enroll oneself in palliative care. All data were
cleaned and analyzed using STATA version 14 (StataCorp, 2015).
Results
Sample Description – Total Sample
Our total sample included 406 adults aged 50 and older (see Table 9), of which 124 were
recruited in-person and 282 were recruited online. Study participants ranged from 50 to 93 years
old (M=63.7, SD=10.3). There were 265 (65.3%) Black participants and 141 (34.7%) White
participants, with 66% of the sample identifying as female. The marital status with the highest
frequency was married (39.7%), followed by single/never married (24.9%), separated/divorced
(23.3%), and widowed (12.3%) participants. This was a fairly educated sample: 81.5% of
participants reported having at least some college education. About 31.8% of the sample fell in
the highest income category of $50,000 or greater per annum (p.a.). The next largest group was
in the $20,000 to $29,000 p.a. category (16.8%). Many of the participants also reported being
retired (42.1%) and neither having any chronic diseases (37.9%) nor ever experiencing pain-
related sensations (34.0%). About a third had completed a living will (33.0%) or elected a
durable power of attorney for health care (35.2%), while 54.9% reported having discussed their
care preferences should they became seriously ill in the future. Nearly half the participants
51
(49.3%) had heard of palliative care prior to participating in this study, but only a quarter
(25.1%) knew of someone who is currently receiving or had received palliative care before. On
the other hand, more than half (58.1%) reported knowing someone who is currently receiving or
had previously received hospice care.
Differences Between In-person Sample and Online Sample
There were some statistically significant differences between the in-person (N=124) and
online (N=282) samples in this study (Table 9). The in-person sample was older (M=73.4,
SD=10.8) than the online (M=59.5, SD=6.5) sample (t=16.0, p<0.001). Further, there was a
statistically significant difference in the marital status between the online and in-person samples
(c
2
=48.0, p<0.01), with the online sample having higher rates of married participants (44.7%)
while the in-person sample had higher rates of widowed participants (29.0%). The online sample
also was more highly educated (c
2
=15.8, p<0.01), and was more likely to be employed full-time
(c
2
=95.0, p<0.001). At the same time, most of the younger, online sample had neither completed
a living will (c
2
=23.9, p<0.001) nor elected a durable power of attorney for health care (c
2
=35.3,
p<0.001). Similarly, a smaller proportion of the online sample had neither heard of palliative
care (c
2
=12.0, p<0.01) nor known someone who is currently receiving or has received palliative
care (c
2
=8.9, p<0.01) compared with the in-person sample. See Table Y.
Statistical Analyses
Sixty-four percent of the total sample were shown role model videos that were in concordance
with the primary race/ethnicity that the participant identified with. There was a weak but
statistically significant, negative relationship between age and outcome variable, total posttest
score. There were also statistically significant relationships between total posttest score with the
education and income variables, as well as with participants who reported having completed a
52
living will, elected a durable power of attorney for health care, heard of palliative care, and
known of someone who received either palliative care or hospice care. On the other hand, total
posttest score was not significantly associated with gender, marital status, employment status,
self-reported number of chronic diseases, self-reported frequency of pain, nor engagement in
advance care planning discussions.
Further, the average pretest score was 5.70 (SD=4.9), out of a total of 13 possible points.
Mean total knowledge scores rose significantly to a mean of 11.23±2.4 posttest, after viewing
the role model video stories (t=23.2, p < 0.001). We found significant increases in all 13 items
in the PaCKS (Table 10), with the largest increase found in knowledge that palliative care is not
limited to people who were given six months or less to live (226.7% increase; p < 0.01). Other
items recording more than 100% increase in correct responses were found in knowledge that
palliative care also addresses psychological issues related to serious illness (127.3% increase; p <
0.01); that receipt of palliative care does not require withdrawal from curative treatment (116.0%
increase; p < 0.001); that palliative care can also be home- or community-based (106.8%
increase; p < 0.001); and that palliative care also addresses stress from serious illness (103.7%
increase; p < 0.01). See Table X.
Regression analysis (Table 11) revealed that for White participants who viewed White
role model patient stories, PaCKS scores increased by 1.26 points (SE=0.36, p=0.001) at
posttest, when compared with White participants who watched Black role model patients.
Another group that was statistically significant was Black participants who watched White role
model patients, which recorded an improvement of 0.95 points (SE=0.38, p=0.013) in the total
posttest score, compared with White participants who watched Black role model patients.
Participants who were recruited online (b=1.00, SE=0.31, p<0.01) significantly predicted higher
53
total posttest scores. Similarly, participants who reported believing that the role models were
actual patients (b=3.80, SE=0.53, p<0.001) significantly predicted higher total posttest scores,
controlling for total pretest scores. Other significant predictors of total posttest scores include
total pretest score (b=0.10, SE=0.03, p<0.01); having completed high school or lower (b=–1.03,
SE=0.40, p<0.05) or being a college graduate (b=–0.82, SE=0.32, p<0.05), both compared with
having a post graduate education; having an annual income of less than $10,000 (b=–1.26,
SE=0.41, p<0.01) compared with an income of at least $50,000; having completed a living will
(b=–0.72, SE=0.31, p<0.05); and having discussed care preferences (b=0.51, SE=0.26, p<0.05).
The multivariate Wald test revealed that the independent variable, race concordance, was
statistically significant (F(3,361)=5.39; p<0.01) against outcome variable, total posttest score,
after adjustment for their respective covariates in the model.
Additionally, there was a significant increase in self-reported intentions to enroll a family
member in palliative care services should the need arise. At pretest, 42.61% of participants
expressed willingness to enroll a family member in palliative care if the need arose (see Table
12). Following the presentation of the role model video stories, the proportion of participants
willing to enroll a family member in palliative care almost doubled to 82.5% (c
2
=82.1, p<0.001).
Similarly, the intent to enroll oneself in palliative care if and when necessary, also rose from
40.4% at pretest to 78.6% at posttest (c
2
=54.8, p<0.001). When stratifying by race concordance,
the Fisher’s exact test revealed a statistically significant association in intent to enroll a family
member in palliative care from pretest to posttest among all groups (Table 13). However,
applying the same test to intent to enroll oneself in palliative care revealed statistically
significant relationships in all groups except among White participants who viewed Black role
model videos (p=0.157, Fisher’s exact test, two-tailed) (see Table 13).
54
Discussion
This is the first study conducted to investigate the role of race concordance in improving
palliative care knowledge among older adults. Our study found that actual patient role model
video stories can improve palliative care knowledge among community-based older adults and
that race concordance between the patient role model and community-based older adult was
significantly associated with increased knowledge among both Black and White participants.
Further, we found that race concordance influenced intent to enroll a family member or self in
palliative care in all groups except for the White race discordant group.
This study provides further evidence of the effectiveness of actual patient role model
video stories in improving consumer knowledge about palliative care. Similar to the pilot study
with community-based adults aged 50 and older (Hoe et al., 2021), this study showed significant
improvement in palliative care health literacy among participants across the board. Interestingly,
this study differs from the pilot study in that this study participants only consumed eight minutes
of patient role model video stories, compared with 12 minutes of video stories in the pilot study.
Additionally, this study distinguishes itself from the pilot study by testing the effects of
race concordance between the patient role model with the older adult consumer. The findings
show that race concordance does play a critical role in improving community-based older adults’
palliative care health literacy. The improvement in knowledge score was greater in race
concordant groups for both Blacks and Whites compared with those in the race discordant
groups. These findings parallel findings from other studies showing physician-patient race
concordance as having a significant impact on patient satisfaction with care (LaVeist & Nuru-
Jeter, 2002) and perceived quality of physician’s service (Saha et al., 1999). However, it is
possible that the effect is rooted in the style of communication as opposed to race itself. There
55
may be certain cultural cues that those in the race discordant groups did not observe nor
understand. One participant in the race concordant group did note that he would have related
better to the discordant role model as they share the same interests. Having said that, it is
important to note that significant improvements in mean total knowledge scores were still
observed across all concordant and discordant groups.
Concerning intent to enroll in palliative care, both race concordant and discordant groups
observed increased preference towards enrolling family members in palliative care, should the
need arise. However, the trend changes slightly with intentions to enroll oneself in palliative
care, should the need arise as the increase in intent to enroll in palliative care was not significant
within the White, race discordant group. These findings suggest the possible delicate nature of
race concordance in healthcare educational tools. On the one hand, a possible explanation might
be that for Blacks, race discordance in healthcare-related information and settings is normalized.
As at July 1, 2019, the Association of American Medical Colleges reported that only 5.0% of all
active physicians in the United States identified as Black/African American (Association of
American Medical Colleges, 2020). In a survey on YouTube palliative care videos, more than
90% of palliative care information videos had White protagonists (Liu et al., 2019). On the other
hand, this might have been a sampling issue as the White discordant sample was the smallest
among all the concordant and discordant groups.
Overall, the patient role model video stories seem to be an effective tool in improving
palliative care knowledge among community-based older adults, as it has in communicating
other health information (Berkley-Patton et al., 2009; Bokhour et al., 2016; Reininger et al.,
2010). It also demonstrates a considerable effectiveness in changing intentions to enroll in
palliative care for both a family member or oneself, if and when the need arises. It certainly has
56
its advantages in terms of its inclusivity as it can be adapted to accommodate sensory
impairments such as vision and hearing, its ease of dissemination in digital video format over the
Internet, the authenticity of actual patients sharing their experiences, and its low cost to produce,
given that anyone and everyone can be an independent filmmaker with a smartphone.
Limitations
This study has several limitations. The in-person sample was recruited only in the greater Los
Angeles area while the online sample was not geographically bound, although the data collection
was limited to the United States only. There was also no control group using standard printed
healthcare information literature to illuminate any observable differences relating to the medium
used in this study.
Conclusion
This study shows that palliative care patient role model video stories are effective in improving
knowledge among community-based older adults, regardless of race concordance. However, a
greater improvement was observed when there was race concordance. Given the current climate
where health disparities disproportionately affect ethnic minorities, it is imperative that we
seriously consider changing how we communicate health information with the different layers of
society. Patient role model video stories has demonstrated its ability to inform and educate
people in an accessible format. Aside from finding ways to distribute and raise the profile of
these palliative care patient stories, next steps include building the right infrastructure to preserve
the consistency and accuracy of information that is disseminated to the targeted audience.
Further, it is imperative that we also test the efficacy of these palliative care role model stories to
persuade eligible patients to enroll in palliative care within real world settings, such as clinics
and hospitals.
57
Table 7. In-person Recruitment Model

Role Model Racial
Concordance
In-Person Study Participant Racial Concordance
Black White
Black 40 40
White 40 40
N = 80 N = 80

Table 8. Online Recruitment Model
Role Model Racial
Concordance
Online Study Participant Racial Concordance
Black White
Black 50 50
White 50 50
N = 100 N = 100

Pretest Posttest
< 8 minutes
58
Table 9: Descriptive Statistics

Total Sample
(N=406)
In-person (N=124) Online (N=282)
Pearson
chi-sq

n % n % n % p-value
Age range (years) 50 - 93
(M=63.7, SD=10.3)
50 - 93
(M=73.4, SD=10.8)
50 - 87
(M=59.5, SD=6.5)
<.001
Race 0.488
Black 265 65.3 84 67.7 181 64.2
White 141 34.7 40 32.3 101 35.8
Gender 0.474
Female 268 66.0 85 68.6 183 64.9
Male 138 34.0 39 31.5 99 35.1
Marital Status <.001
Single/Never married 101 24.9 26 21.0 75 26.6

Married/Living with
partner 161 39.7 35 28.2 126 44.7
Widowed 50 12.3 36 29.0 14 5.0
Separated 14 3.5 5 4.0 9 3.2
Divorced 80 19.7 22 17.7 58 20.6
Education 0.007
Some high school or less 12 3.0 8 6.5 4 1.4
High school graduate 63 15.5 21 16.9 42 14.9
Some college 126 31.0 38 30.7 88 31.2
College graduate 134 33.0 29 23.4 105 37.2
Post graduate 71 17.5 28 22.6 43 15.3
Annual income 0.240
< $10,000 46 11.3 18 14.5 28 9.9
$10,000 - $19,000 63 15.5 19 15.3 44 15.6
$20,000 - $29,000 68 16.8 24 19.4 44 15.6
$30,000 - $39,000 55 13.6 15 12.1 40 14.2
$40,000 - $49,000 43 10.6 7 5.7 36 12.8
>= $50,000 129 31.8 39 31.5 90 31.9
Missing 2 0.5 2 1.6
Employment status <.001
Full time 130 32.0 7 5.7 123 43.6
Part time 58 14.3 13 10.5 45 16.0
Unemployed 46 11.3 8 6.5 38 13.5
Retired 171 42.1 95 76.6 76 27.0
Missing 1 0.3 1 0.8
Self-reported number of chronic
diseases 0.246
0 154 37.9 41 33.1 113 40.1
1 128 31.5 41 33.1 87 30.9
2 or 3 102 25.1 31 25.0 71 25.2
4+ 21 5.2 10 8.1 11 3.9
Missing 1 0.3 1 0.8

59

Total Sample
(N=406)
In-person (N=124) Online (N=282)
Pearson
chi-sq

n % n % n % p-value
Frequency experiencing pain-
related sensations 0.461
Never 138 34.0 43 34.7 95 33.7
Once a month 76 18.7 18 14.5 58 20.6
Once a week 53 13.1 16 12.9 37 13.1
Every other day 57 14.0 20 16.1 37 13.1
Every day 64 15.8 18 14.5 46 16.3
More than once a day 17 4.2 8 6.5 9 3.2
Missing 1 0.3 1 0.8
Has completed a living will <.001
Yes 134 33.0 62 50.0 72 25.5
No 271 66.8 61 49.2 210 74.5
Missing 1 0.3 1 0.8
Has discussed care preference 0.087
Yes 223 54.9 76 61.3 147 52.1
No 183 45.1 48 38.7 135 47.9
Has elected a durable power of
attorney for health care <.001
Yes 143 35.2 70 56.5 73 25.9
No 263 64.8 54 43.6 209 74.1
Has heard of palliative care 0.001
Yes 200 49.3 45 36.3 155 55.0
No 206 50.7 79 63.7 127 45.0
Knows someone receiving/has
received palliative care 0.003
Yes 102 25.1 19 15.3 83 29.4
No 303 74.6 104 83.9 199 70.6
Missing 1 0.3 1 0.8
Knows someone receiving/has
received hospice care 0.883
Yes 236 58.1 71 57.3 165 58.5
No 169 41.6 52 41.9 117 41.5
Missing 1 0.3 1 0.8
Race concordance with video 0.752
Same race 260 64.0 78 62.9 182 64.5
Different race 146 36.0 46 37.1 100 35.5

60
Table 10. Responses to Knowledge Questions (N=404)

Knowledge questions
Pre Post Percent
Improved
% Correct
1 One goal of palliative care is to address any
psychological issues brought up by serious illness.
40.8 92.8 127.3**
2 Stress from serious illness can be addressed by
palliative care.
46.5 94.8 103.7**
3 Palliative care can help people manage the side effects
of their medical treatments.
49.8 91.3 83.6**
4 When people receive palliative care, they must give up
their other doctors.
38.9 76.7 97.5***
5 Palliative care is exclusively for people who are in the
last six months of life.
26.0 84.9 226.7**
6 Palliative care is specifically for people with cancer. 46.0 82.2 78.5***
7 People must be in the hospital to receive palliative care. 43.6 90.1 106.8***
8 Palliative care is designed specifically for older adults. 42.1 66.3 57.6***
9 Palliative care is a team-based approach to care. 47.5 90.3 90.1***
10 One goal of palliative care is to help people better
understand their treatment options.
48.3 87.4 81.0***
11 Palliative care encourages people to stop treatments
aimed at curing their illness.
40.1 86.6 116.0***
12 One goal of palliative care is to improve a person’s
ability to participate in daily activities.
45.0 89.9 99.5***
13 Palliative care helps the whole family cope with a serious
illness.
55.0 89.9 63.5***
** p < 0.01; *** p < 0.001

61
Table 11. Regression Analysis: Predictors of Total Posttest Scores
Variables β (SE) p-value
Race Concordance (Ref: Black RM, White participant)

Black RM, Black participant 0.414 (0.347) 0.234

White RM, Black participant 0.951 (0.383) 0.013

White RM, White participant 1.257 (0.359) 0.001
Online participant 1.003 (0.306) 0.001
Total Pretest Score 0.101 (0.029) 0.001
Self-perceived authenticity of the role model 3.801 (0.530) < 0.001
Age –0.003 (0.015) 0.836
Education (Ref: Post Graduate)

High school graduate or lower –1.028 (0.396) 0.010

Some college –0.420 (0.323) 0.195

College graduate –0.824 (0.320) 0.010
Female 0.447 (0.231) 0.053
Marital Status (Ref: Single)

Married/Living with partner –0.179 (0.282) 0.526

Widowed –0.320 (0.413) 0.440

Separated/Divorced 0.182 (0.302) 0.547
Annual income (Ref: > $50,000)

< $10,000 –1.258 (0.412) 0.002

$10,000 - $19,000 0.054 (0.355) 0.878

$20,000 - $29,000 –0.331 (0.324) 0.307

$30,000 - $39,000 0.107 (0.345) 0.757

$40,000 - $49,000 0.549 (0.380) 0.149
Employment status (Ref: Full-time)

Part-time 0.235 (0.343) 0.493

Unemployed 0.133 (0.406) 0.743

Retired 0.575 (0.311) 0.065
Self-reported number of chronic diseases (Ref: None)

One –0.253 (0.268) 0.346

More than two –0.031 (0.284) 0.913
Frequency experiencing pain-related sensations (Ref: Nil)

Once a month 0.000 (0.305) 1.000

Once a week –0.169 (0.343) 0.622

Every other day –0.048 (0.357) 0.892

At least once a day 0.225 (0.322) 0.486
Has completed a living will –0.720 (0.305) 0.019
Has discussed care preference 0.506 (0.258) 0.050
Has elected a durable power of attorney for health care –0.169 (0.292) 0.562
Has heard of palliative care –0.479 (0.311) 0.125
Knows someone receiving/has received palliative care 0.079 (0.306) 0.796
Knows someone receiving/has received hospice care 0.083 (0.231) 0.719
Constant 6.750 (1.275) < 0.001
R-squared 0.36

Adjusted R-squared 0.30

N 396

62
Table 12. Changes in intent to enroll in palliative care from pretest to posttest
Pretest Posttest Fisher’s Exact Test
For family member 42.61% 82.51% < 0.001
For self 40.39% 78.57% < 0.001

Table 13. Changes in intent to enroll in palliative care by race concordance
Participant
Race
Fisher's Exact Test

Family Self
White Role
Model
Black 0.001 0.002
White < 0.001 0.022
Black Role
Model
Black < 0.001 < 0.001
White 0.032 0.157

63
Figure 1. Change in Mean Total Palliative Care Knowledge Score

*** p < 0.001, ** p < 0.01, * p < 0.05; RM: role model

Figure 2. Change in Intent to Enroll Family Member in Palliative Care

*** p < 0.001, ** p < 0.01, * p < 0.05; RM: role model

Figure 3. Change in Intent to Enroll Oneself in Palliative Care

*** p < 0.001, ** p < 0.01, * p < 0.05; RM: role model

0
2
4
6
8
10
12
14
Black RM*** White RM*** Black RM*** White RM***
Black Participant White Participant
Pretest Posttest
0
50
100
150
Black RM*** White RM** Black RM* White RM***
Black Participant White Participant
Pretest Posttest
0
50
100
150
Black RM*** White RM** Black RM White RM**
Black Participant White Participant
Pretest Posttest
64
Chapter 5. Discussion, Limitations, & Conclusion
This dissertation investigated consumer barriers to palliative care and one possible path
forward to promote engagement in palliative care at the community level. Specifically, studies
presented here support the efficacy of authentic, cost-effective, inclusive, and accessible
palliative care role model video stories to improve palliative care health literacy. Primary
findings from this dissertation echo prior studies: one of the main obstacles of wider palliative
care engagement is the lack of knowledge about palliative care. Our studies also lend a different
perspective on serving an otherwise underserved segment of society while presenting some
outreach approaches to accomplish that goal more effectively.
The lack of knowledge about palliative care has hindered many patients from accessing
this additional layer of supportive care should the need arise, including the safety net population
in the great state of California (Aldridge et al., 2016; Bazargan et al., 2021). Language and
culture barriers persist, in part because palliative care does not always have a direct nor
appropriate translation in other languages (Chan & Woodruff, 1999; Silva et al., 2015). For
example, one ethnic Chinese male in our study reacted very strongly when we used the closest
translation for palliative care in Mandarin Chinese. He immediately responded, “Bad
translation! You must change this! I feel uncomfortable about this term!” This finding suggests
the need for targeted interventions for each culture. That said, it would be equally prudent to
note that almost none of the English-speaking study participants had knowledge about palliative
care either.
This dissertation also demonstrated the effectiveness of palliative care role model stories
in improving palliative care knowledge among community-based older adults. While generally,
there was improvement in knowledge scores across the board, there also was marginally greater
65
improvement in knowledge scores when there was race concordance between the palliative care
role model and the health information consumer. The role model stories were also effective in
positively changing one’s intent to enroll in palliative care for themselves or for a family
member, if there is a need. Interestingly, this was statistically significant for Black/African
Americans in both race concordant and race discordant groups. However, this was statistically
significant for the White, race concordant group but not the White, discordant group. This
further supports the assertion that we need targeted interventions for each culture, be they ethnic
majority or ethnic minority.
Given the numerous benefits that palliative care promises its patients and their families,
or caregivers, it would bode well for us to promote palliative care across all layers of society.
We take to heart the fact that patients generally would like to learn about palliative care services
from their physicians, as our study showed, suggesting that the level of confidence that patients
have in their physicians cannot be taken lightly. However, we also found that community-based
older adults as health information consumers are perfectly capable of being informed accurately
about palliative care through role model stories. The favorable outcomes recorded in this
dissertation offer hope for a bottom-up approach that may be challenging, but that remains true
to the principles of patient autonomy. In this fragmented health care system, patient advocacy is
often a singular effort by the patient, for the patient, and therefore, with knowledge, the patient is
empowered to make informed decisions about their own medical care. This might also
compensate for physicians’ poor understanding of what a palliative care patient might look like
(Mechelen et al., 2013), and address the misconception of palliative care perpetuated by health
care professionals (Meier & Morgan, 2019). Alternatively, given that current approaches of
educating health care professionals have been underwhelming (Suwanabol et al., 2018; Tieman,
66
2016; Visser et al., 2014), expanding access to these videos among primary care physicians and
specialist clinics would be an important next step in research.
At the same time, it is imperative for us to acknowledge that racial disparities do exist
and to pay closer attention to the equal distribution of information. We know from a prior study
that mainstream media delivers health information differently from news media targeting African
Americans and that these differences were not merely cosmetic (Fishman et al., 2012). The
African American news media was more inclined to avoid negative news, paint a rosier picture
of the cancer trajectory, mention treatment failure fewer times, and seldom focus on both end-of-
life cancer care and death and dying (Fishman et al., 2012). This might also explain one of the
mechanisms through which palliative care is easily mistaken as end-of-life care for the
terminally ill only among ethnic minorities. If this then precludes palliative care engagement for
this population segment, then that would be a misfortune. Arguably, this may be related to
communication styles as opposed to racial differences. If so, then it cements the importance of
having diverse representation in palliative care role model video stories, and in all other health
information sources.
One may also argue that palliative care is a public health issue. Unfortunately, too few
public health programs in the U.S. have included any palliative care content in their curriculums
(Lupu et al., 2013). We also know that only when people know what palliative care is, either
through word of mouth or by changing the language describing palliative care, do they want it
(Hoe et al., 2021; McInturff & Harrington, 2011; Meier & Morgan, 2019). This further supports
the need to shift education initiatives further downstream, by empowering the individual patient.
Palliative care role model stories are ideal because they speak authentically about their own
experiences with palliative care. By using digital video, we also have greater flexibility in
67
creating a more inclusive experience for all older adults, irrespective of race, gender, health
status, functional health, and sensory capabilities. Yet, we must be equally prepared to
accommodate greater demand for palliative care. Currently, we continue to face a shortage of
qualified palliative care health care professionals (Kamal et al., 2017).
Limitations
This dissertation has some limitations. All the study participants who were recruited in
person live in and around the Los Angeles county area while the online recruitment was not
geographically bound aside from being in the United States. Neither one of the quantitative
studies included a control group, hence we are unable to illuminate any observable differences in
the study design compared with other modes of disseminating health information. Due to the
nature of the online recruitment model, we may have selection bias by education, socioeconomic
status, and age.
Conclusion
Our population is aging and as age is the risk factor for so many chronic, serious
illnesses, we are likely facing a society living in pain and discomfort while navigating these
illnesses. Palliative care often fulfills its promise of a better quality of life for the seriously ill
patient and by extension, their family members and/or caregiver(s) (Pasman et al., 2009;
Zimmermann et al., 2008). Therefore, it is imperative that patient knowledge of palliative care is
strengthened in order to ensure informed decision-making for any and all community-dwelling
individuals. Palliative care role model stories are one giant step forward in this direction.
68
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Abstract (if available)

Abstract Palliative care is specialized medical care that aims to provide comfort and supportive care to seriously ill patients, irrespective of age and at any stage of their disease trajectories. Unlike hospice care, palliative care and curative treatment can be provided parallel to each other. Similar to hospice care, palliative care aims to alleviate pain and symptoms via a person-centered care approach, with the primary aim of improving a patient’s quality of life. Despite evidence of the effectiveness of various models of palliative care that are currently widely available, awareness and access to this additional layer of support falls short, thus precluding many who would benefit from this care from receiving it. ? This dissertation sought to identify patient-level obstacles to engagement in palliative care among community-dwelling adults and to test the efficacy of role model stories to improve palliative care knowledge among community-dwelling older adults. Study 1 used a qualitative research design and grounded theory approach to uncover paths forward to increasing palliative care referral and enrollment among Medi-Cal patients in Los Angeles. Study 2 used a pretest-posttest study design to determine the effectiveness of theory-driven role model video stories in improving knowledge of palliative care among a diverse sample of adults aged 50 and older. Study 3 also used a pretest-posttest study design to investigate how race concordance in health messaging might affect changes in palliative care knowledge scores among English-speaking, community-based adults aged 50 and older. ? The analyses revealed that lack of palliative knowledge precludes all layers of society from receiving potentially beneficial palliative care services. Further, it was found that the authenticity of role model video stories critically and effectively aids in teaching a diverse older adult population about palliative care, and positively changing intent to enroll in palliative care. Finally, while palliative care role model stories improved palliative care knowledge across the board, the improvement is greater in race concordant groups, which holds true when considering the changes in intent to enroll in palliative care. ? In conclusion, there is a need to address the low palliative care health literacy among community-based older adults, especially now that it is more widely accessible than ever before. Given the numerous benefits that palliative care promises its patients and their families, or caregivers, it would bode well for us to promote palliative care across all layers of society. The favorable outcomes recorded in this dissertation offer hope for a public health approach that remains true to the principles of patient autonomy. In this fragmented health care system, patient advocacy is often a singular effort by the patient, for the patient, and therefore, with knowledge, the patient is empowered to make informed decisions about their own medical care. This might also compensate for physicians’ poor understanding of what a palliative care patient might look like and address the misconception of palliative care perpetuated by health care professionals. Alternatively, given that current approaches of educating health care professionals have been underwhelming, expanding access to these videos among primary care physicians and specialist clinics would be an important next step in research. Ultimately, it is imperative that patient knowledge of palliative care is strengthened in order to ensure informed decision-making for any and all community-dwelling individuals. Palliative care role model stories are one giant step forward in this direction.

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Asset Metadata

Creator Hoe, Deborah Fui Yuen (author)

Core Title Palliative care: breaking the knowledge barrier among community-based older adults

School Leonard Davis School of Gerontology

Degree Doctor of Philosophy

Degree Program Gerontology

Degree Conferral Date 2021-08

Publication Date 07/14/2022

Defense Date 05/26/2021

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag health communication,Health Education,OAI-PMH Harvest,older adults,palliative care,role model,Storytelling

Format application/pdf (imt)

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Enguidanos, Susan (committee chair), Crimmins, Eileen (committee member), Ho, Jessica (committee member)

Creator Email deborah.hoe@gmail.com,dhoe@usc.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-oUC15580163

Unique identifier UC15580163

Legacy Identifier etd-HoeDeborah-9734

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Rights Hoe, Deborah Fui Yuen

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Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

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