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Eliciting perspectives on palliative care: outpatient visits, advance care planning, and the impact of COVID-19

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Eliciting perspectives on palliative care: outpatient visits, advance care planning, and the impact of COVID-19

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Content Eliciting Perspectives on Palliative Care:
Outpatient Visits, Advance Care Planning, and the Impact of COVID-19
by

Yu-Hsuan (Olivia) Wang

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

August 2023

Copyright 2023 Yu-Hsuan (Olivia) Wang
ii
Acknowledgments
I would like to express my deepest appreciation to my advisor, Dr. Susan Enguidanos.
Thank you for making everything happen. You are always the best cheerleader for us. Five years
is a long journey. You have witnessed my ups and downs and always are there for me. Thank you
for being my secure base even when I reached out to you for different weird personal life things
such as housing and a broken ankle. I am grateful to have you as my mentor.
I would like to thank Dr. Mireille Jacobson. You are always willing to support us as a
professor and as the chair of the Ph.D. program. We are so lucky to have you. Also, I feel privileged
to have you review my GSA posters for the past two years to help me think from a broader and
different perspective. Not to mention that, as a big fan of yours, I was able to take GERO 592
before I graduated. Thank you for making my 2023 birthday wishes come true. Also, thanks for
the gluten-free bagels. They were delicious.
Thank you, Dr. Cheng-Pei Lin. Your experiences in the United Kingdom and Taiwan were
important to me. We met in 2018 when we worked hard on MOE grants. Thanks for helping me
become a better researcher.
I appreciate my failure in the first qualifying exam and all the support I received. This
experience helped me understand that I am not alone, and I have such a strong social support
network at GERO. Thank you, Dr. Elizabeth Zelinski, Dr. Eileen Crimmins, Dr. Joseph Saenz, Dr.
Jessica Ho, Dr. Jenifer Ailshire, Dr. Kate Wilber, and Dr. Mireille Jacobson. Thank you for helping
me achieve this milestone by allowing me to bug you with multiple essay attempts. You assisted
me to qualify for a Ph.D. candidate. Also, a big thank you to all the peer support I received during
quals preparation: Gillian, Narae, Margarita, Qiao, Erfei, Meki, and Fisher. Gillian, you are more
iii
than a qual peer and lab friend to me. Thanks for always being there, reading my edits, giving me
helpful feedback, and sending me positive vibes. Narae, I could not pass the quals without you.
You are the best peer to me. Meki, thanks for keeping an eye on any postdoc positions for me. I
will always be here for you as well.
I would like to extend my thanks to my other lab- and officemates and cohort members:
Eunyoung, Vale, Yujin, Shelby, Dokyung, Jessie, Eleanor, Stephanie, Lilly, Mutian, Isabella, Suzy,
Kelly, Sheila, and Mengzhao. You are all my coffee friends. Many thanks to my peer mentors:
Deborah, Liz, and Yuan. I need to save some words otherwise I probably would write a whole
page of appreciation for all of you. We went through a lot together. I am glad that I completed this
journey with you.
I want to thank all the patients and caregivers I have met. You initiated my Ph.D. journey.
Lastly, I am genuinely appreciative and positively overwhelmed by the love and belief I’ve
received from my family, my colleagues in hospice, and my friends. Thank you, Dad. Thank you,
Joyce. Thank you, Z. Thank you, J. Thank you, M.

iv
Table of Contents
Acknowledgments…………..……………………………………………………………….ii
Lists of Tables………………………………………………………………...…………...………….vi
Lists of Figures...…………...…………...…………...…………...………………………...vii
Abbreviations...…………...…………...…………...…………...……………………….....viii
Abstract...…………...…………...…………...…………...………………………...................ix
Chapter 1: Introduction ......................................................................................................................... 1
Theoretical Framework ........................................................................................................ 1
Palliative Care ...................................................................................................................... 1
Palliative Care in Taiwan ..................................................................................................... 3
COVID-19 and Palliative Care ............................................................................................ 5
Advance Care Planning ........................................................................................................ 7
Research on the Effectiveness of ACP Conversations ......................................................... 8
Factors Associated with ACP Activities .............................................................................. 9
Multiple Chronic Conditions (MCCs), Outpatient Visits, and ACP .................................. 10
ACP in Taiwan ................................................................................................................... 11
ACP among Kidney Disease Patients in Taiwan ............................................................... 12
Summary and Research Questions ..................................................................................... 15
Chapter 2: Home-Based Palliative Care Team Member's Perspective on the Impact
of COVID-19 ........................................................................................................................................ 17
Background ........................................................................................................................ 17
Methods .............................................................................................................................. 19
Results ................................................................................................................................ 23
Discussion .......................................................................................................................... 34
Limitation ........................................................................................................................... 36

v
Conclusion .......................................................................................................................... 36
Chapter 3: The Relationship between Multiple Chronic Conditions and Physician
Visits in Advance Care Planning Activities .................................................................................... 38
Background ........................................................................................................................ 38
Methods .............................................................................................................................. 40
Analysis .............................................................................................................................. 42
Results ................................................................................................................................ 42
Discussion .......................................................................................................................... 48
Limitations ......................................................................................................................... 50
Implications ........................................................................................................................ 51
Chapter 4: A Pilot Study on the Implementation of ACP in Taiwan……………………….52
Introduction ........................................................................................................................ 52
Method ............................................................................................................................... 55
Result .................................................................................................................................. 58
Discussion .......................................................................................................................... 67
Limitation ........................................................................................................................... 71
Conclusion .......................................................................................................................... 72
Chapter 5: Discussion, Limitations, & Conclusion ....................................................................... 73
Future Directions ................................................................................................................ 77
Limitation ........................................................................................................................... 77
Conclusion .......................................................................................................................... 78
Bibliography: ........................................................................................................................................ 79

vi
Lists of Tables
Table 2.1 HBPC Interview Protocol among Medical Team Members ......................................... 22
Table 2.2 Sample Characteristics (N=14) ..................................................................................... 24
Table 2.3 Organization Of Themes, Subthemes, And Definitions ............................................... 29
Table 3.1 Characteristics of Analytic Sample, Respondents with AD Completion, ACP
experience, and medical proxies. Weighted percentages and weighted means with standard
deviation………………………………………………………………………………….....……43
Table 3.2 Logistic Regression Models of ACP-related Issues Among Older Adults, Weighted
Sample .................................................................................................................................... 46
Table 4.1 Protocol of ACP interview among CKD patients and caregivers ……………………57
Table 4.2 Sample Characteristics (N=16) ..................................................................................... 59
Table 4.3 Organization Of Themes, Subthemes, And Definitions ............................................... 63
Table 4.4 The comparison between the patient’s and caregiver’s perspectives ........................... 64

vii
Lists of Figures
Figure 1.1 Confirmed COVID-19 Cases in Taiwan March 2020-September 2022 ....................... 7
Figure 1.2 Prevalence of treated ESRD, by country or region, 2019 (Modified from
USRD, 2020) .......................................................................................................................... 14
Figure 1.3 Incidence of treated ESRD, by country or region, 2019 (Modified from
USRD, 2020) .......................................................................................................................... 14

viii
Abbreviations
AD: Advance Directive
ACP: Advance Care Planning
CKD: Chronic Kidney Disease
HBPC: Home-based Palliative Care
HRS: Health Retirement Study
MCCs: Multiple Chronic Conditions
ix
Abstract
Palliative care and advance care planning (ACP) are increasingly recognized as human
rights. Palliative care aims to provide comfort, goal-concordant, and supportive care to
seriously ill patients. Previous clinical trials have found that palliative care can improve the
quality of life among patients with severe illness while reducing healthcare costs. Home-based
palliative care (HBPC) is one of the most common modes of delivery of palliative care in
Taiwan. The COVID-19 pandemic disrupted healthcare systems and individual lives yet there
is not much known about how it impacted HBPC experiences. The aim of study #1 was to
investigate HBPC medical team members’ perspectives on the delivery of HBPC in Taiwan
during varying COVID-related time points. We found the need for improvement in virtual care
systems, access to virtual care technologies, and co-ordinations between long-term care
facilities and HBPC considering future trade-offs between disease transmission and the quality
of care.
This dissertation also focused on a separate but related topic: ACP. ACP is a process that
empowers individuals, at any age, or any stage of health, with decisional capacities to identify
their values, goals, and preferences for serious illness scenarios. Studies have found that ACP
is associated with more care consistency with patients’ preferences, better quality of death, and
improved caregivers’ bereavement outcomes. Health status, different disease trajectories,
healthcare interaction, and cultural contexts influence ACP engagement. Previous studies
found that multiple chronic conditions and more healthcare interactions were positively
associated with ACP conversations. Yet, little is known about how physician visits are
associated with ACP activities after controlling for the number of chronic conditions and self-
reported health. Additionally, although the importance of adopting a culturally sensitive ACP
x
model is well-recognized, more studies are needed to investigate the cultural contexts such as
the implementation of ACP services in Taiwan.
This dissertation sought to identify policy-level and individual-level challenges and
facilitators to engagement in ACP-related activities. Study #2 investigated the association
among multimorbidity, outpatient physician visits, and ACP engagement in the United States
to understand predictors of engaging in ACP-related activities. Findings indicate the number
of chronic conditions was independently associated with ACP-related activities even when
including physician visits. Study #3 identified patient-level, caregiver-level, and policy-level
facilitators and barriers to ACP engagement among Taiwan's chronic kidney disease
population. Results of this study showed the fees charged ACP should be re-considered for
those with CKD. At the healthcare interaction level, healthcare professionals should be aware
of cultural concerns related to ACP and provide better education to patients with CKD and
their caregivers to make them not feel excluded from the target populations in need of ACP.
In sum, this dissertation has provided insights into how patients in the United States
engaged in ACP conversation when considering their perceived health, multimorbidities, and
physician encounters. Perceived health, multimorbidity, and outpatient visits were
independently important for ACP engagement. This dissertation also provides some directions
on improving the uptake of ACP in Taiwan. As payment is one patient-level barrier to ACP
delivery in Taiwan, policymakers should reconsider the changes in payment rules for ACP
services. Additionally, this dissertation suggests culturally competent communication skills are
important in initiating ACP conversations in Taiwan. Lastly, this dissertation also calls for
better access to virtual care for HBPC in Taiwan. As the global population is aging, this
xi
dissertation might provide new directions to improve the quality of end-of-life care among
different cultures.
1

Chapter 1: Introduction
Theoretical Framework
This dissertation that focuses on home-based palliative care and advanced care planning is guided
by the Behavioral Model of Health Services Use (Aday& Andersen, 1974; Anderson, 1995). This
model aims to integrate and address the potential factors and the mechanism of medical services
use. The model posits that (a) predisposing characteristics, (b) enabling resources, and (c) need
factors are contributing factors to medical service use. Predisposing characteristics, refer to the
pre-existing socio-cultural of individuals, including demographic variables such as gender and age,
social structures, and health beliefs. Enabling resources are accessible or available resources that
allow individuals that may facilitate or hamper access to medical services. These can be
personal/family level and community level variables, such as medical insurance or the affordability
of medical services. Thus, this dissertation will consider enabling resources as accessibility and
affordability of ACP activities and home-based palliative care. Finally, need factors, which are
commonly generated from health problems, include perceived needs and evaluated needs.
Perceived needs are the subjective needs the individual perceived while evaluated needs are health
professionals’ evaluations of the individual’s health needs. For example, the need for ACP
consultation could arise when individuals perceive the progress of their disease.

Palliative Care
2
Worldwide, palliative care is recognized as a human right to health (WHO, 2022).
Palliative care aims to provide comfort, goal-concordant, and supportive care to seriously ill
patients. Palliative care offers support to the family, integrates psychological and spiritual
support into patients’ medical treatments, and improves the quality of life for patients during
serious illness (WHO, 2022; Morrison, 2020; McInturff & Harrington, 2011). Different from
hospice care, palliative care can be delivered at any given age and at any stage of a person’s
disease trajectory (McInturff & Harrington, 2011). Similar to hospice care, palliative care aims
to alleviate pain and symptoms via a person-centered care approach and consequently improve
a patient’s quality of life. However, unlike hospice care, palliative care and curative treatment
can be provided in parallel. Similar to hospice, palliative care employs a team-based approach
comprised of a physician, a nurse or nurse practitioner, a chaplain or spiritual counselor, and a
social worker. The team may also include a psychologist, and specialist therapists, such as
occupational, physical, and respiratory therapists if patients have additional needs.

Many studies have documented positive outcomes related to the receipt of palliative care.
Studies have shown palliative care can alleviate pain and symptoms, reduce anxiety and
depressive symptoms for patients and their caregivers, and improve the quality of life for
seriously ill patients (Akechi et al., 2004; Elkington et al., 2004; Moussavi et al., 2007; Shaffer
et al., 2017; Van Lancker et al., 2014). Currently, approximately 40 million people worldwide
could benefit from palliative care; however, only about 12% of this group has access to and
receives palliative care (WHO, 2022). Therefore, developing and promoting palliative care
globally can be regarded as the application of human rights to health and equality.
3
Palliative Care in Taiwan
Taiwan is playing a pioneering role in palliative care in Asia. Taiwan was the first Asian
country to include palliative care and ACP in its national law and healthcare system. In 1990,
Taiwan passed the Hospice Palliative Care Act, which focused largely on the quality of hospice
care. In 2004, Taiwan made palliative care services available for patients at any stage of illness.
In the last decade, the provision of palliative care increased from 7% to 64.1% among those
in their last year of life (Health Promotion Administration, 2020) The palliative care service in
Taiwan is recognized as having a comprehensive strategy for the development and promotion
of national palliative care, an adequate number of specialized palliative care professionals, an
adequate government subsidy that benefits from its national health insurance, and a generally
basic understanding and awareness of palliative care and services (Economist Intelligence Unit,
2015)., Taiwan has been ranked as providing the best quality of palliative care service in the
Asia Pacific region (Economist Intelligence Unit, 2010; Economist Intelligence Unit, 2015;
Finkelstein, Bhadelia, Goh, Baid, Singh, Bhatnagar, & Connor, 2022).
Investigating palliative care experiences in Taiwan may inform palliative care experiences
in other Asian countries, as Taiwan shares many cultural similarities with other, particularly
Eastern, Asian countries. First, family-led communication in medical settings is prevalent in
Taiwan as in many Asian countries. Cheng et al (2020) reviewed ACP in Hong Kong,
Indonesia, Singapore, South Korea, and Taiwan and found that families take a dominant role
in medical communications because of the impact of Confucianism and collective cultures.
Studies also point out that patients in Taiwan prefer family members to make medical decisions
for them (Ho, 2016; Zager& Yancy, 2011). Thus, the involvement of families in healthcare
decision-making is essential across Asia. Second, Taiwan shares similar religious and cultural
4
beliefs with many other Asian countries; most Taiwanese are Buddhists, and the majority of
Asians are Buddhist, Hindus, or Muslims. Thus, findings from this Taiwanese-focused study
may have implications for the broader Asian population.
Despite the enormous progress Taiwan has made in palliative care provision, disparities in
palliative care receipt exist. The rate of palliative care provision varies by disease; 61% of
cancer patients in need of palliative care receive it while only 14% of non-cancer patients in
need of palliative care receive care (National Health Insurance Administration, 2020). To move
forward, eliminating the disparities in palliative care among different disease populations is an
essential goal to advance Taiwan's palliative care services.
Home-based palliative care (HBPC) is one common type of palliative care service in
Taiwan. In 2019, nearly one out of four (24.3%) palliative care recipients received palliative
care in the home (National Health Insurance Administration, 2021). HBPC services include
multi-disciplinary team member home visits (which include physicians, nurses, social workers,
and psychologists), procedures, medical prescriptions, and laboratory tests, all of which are
covered by National Health Insurance Administration in Taiwan. The frequency of home visits
is based on the medical needs of HBPC recipients. Based on a population-based observational
study, HBPC physicians, nurses, psychologists or social workers visited HBPC patients nearly
4, 5, and 6 times per month respectively between 2016 to 2018 (Shih, Chen, & Huang, 2023).
Another population-based observational study showed that compared to patients who did not
receive HBPC, HBPC recipients were more likely to die at home, had better psychological
adjustment, and were less likely to receive aggressive care (Chiang, Lee, & Kao, 2019).
Furthermore, receipt of HBPC in Taiwan has been found to reduce costs of care in the last six
months of life, with HBPC decedents demonstrating $2,452 (US dollars) lower health care
5
expenditure compared to non-HBPC decedents (Chen, Chang& Huang, 2015). Thus, HBPC
services are considered a well-developed delivery model effective in improving the quality of
end-of-life care in Taiwan.

COVID-19 and Palliative Care
COVID-19 has impacted the delivery of palliative care and quality of death (Bhadelia,
Oldfield, Cruz, Singh& Finkelstein, 2021). During the height of the COVID-19 (COVID)
pandemic, telehealth medicine and other virtual forms of care became feasible and desirable forms
of care models for those with severe illnesses (Bhadelia, Oldfield, Cruz, Singh& Finkelstein, 2021).
Yet, palliative care, as a traditional mode of face-to-face delivery, relies heavily on nonverbal
communication, and therefore telehealth medicine for home-based palliative care (HBPC) might
have limitations in communication quality (Zheng, Head& Schapmire, 2016). Additionally,
studies of COVID impact on palliative care include changes in palliative care services and
decreased access by palliative care personnel to patients in long-term care facilities (Rogers,
Constantine, Thompson, Mupamombe, Vanin & Navia, 2021). One study indicated that around
one-third of respondents reported negative impacts on patient outcomes, such as inadequate
symptom management and negative psychosocial consequences (Rogers, Constantine, Thompson,
Mupamombe, Vanin & Navia, 2021). In addition, implementing a hospital-wide visitor ban to
lower the risk of COVID transmission might be included as part of COVID-related policy in
palliative inpatient care internationally. Also, during the height of COVID, there was reduced
traveling and family visits (Wallace, Wladkowski, Gibson & White, 2020). The impacts of low
6
visitation on palliative care during the pandemic need to be explored (Heath, Yates, Carey& Miller,
2020).
HBPC team members are essential for the delivery of HPBC quality and providing
assistance in caregiving skills among caregivers. Unfortunately, there currently are no specific
studies on the COVID-19 impact on HBPC providers and caregivers. One study focused on the
preparedness of palliative care programs in the Asia-Pacific region for the COVID-19 Pandemic.
However, this study largely focused on the resources and perceived transmissive risk rather than
the perceived impact on the delivery of HBPC among palliative care team members. Only two
studies focused on palliative care programs but both examined pediatric palliative care programs.
For example, Weaver et al (2021) investigated 80 cities in the United States to identify the impact
of COVID-19 on pediatric palliative care from palliative care team members’ perspectives. Sixty
percent of the team members reported a more distant team cohesion compared to the pre-pandemic.
The majority (73%) perceived disparities in the quality of virtual care. However, HBPC adult
patients have different characteristics than patients receiving pediatric palliative care. Thus, there
is a lack of understanding about the perceived impacts on HBPC delivery from team members'
perspectives.
Although Taiwan initially reported low rates of COVID-19 (20.7 cases per million in 2020),
by early 2021 the Alpha variant began spreading in Taiwan, and Taiwan subsequently went into a
soft lockdown from May to July 2021. In early 2022, the Omicron variant sparked another outbreak
in Taiwan. Not specific to Taiwan, for the past three years we also have experienced different
waves of the pandemic globally. It is likely that we will continue to experience new variants in the
future. Furthermore, in addition to COVID-19, it is possible we may experience other new public
health emergencies, and consequently, it is essential to learn how the pandemic impacted HBPC.
7

Figure 1. 1 Confirmed COVID-19 Cases in Taiwan March 2020-September 2022

Advance Care Planning
Since patient-centered, goal-concordant care is an essential component of palliative care,
advance care planning (ACP) conversations may be considered an indicator of quality care.
The definition of ACP, according to a consensus Delphi Panel (Sudore et al., 2017), is a process
that “empowers individuals, at any age, or any stage of health status, with decisional capacities
to identify their values, goals, and preferences of serious illness scenarios.” ACP requires
thorough communication with family and healthcare providers. Moreover, ACP may consider
the individuals' physical, psychological, social, and spiritual domains. An ACP conversation
can result in documentation of a person’s stated preferences or identification of a healthcare
proxy. Advance directives (ADs) are documents containing future medical treatments and
possibly designating healthcare surrogates (Brown, 2003; Galamnos, 1998; Jennings,
8
Kaebnick& Murray, 2005) An AD is used when an individual has a serious medical condition
and is unable to communicate and speak for themselves (Brown, 2003; Galamnos, 1998;
Jennings, Kaebnick& Murray, 2005). Initiatives to improve ACP conversation and AD
completion rates have been identified as important goals in clinical, research, and policy areas
(Centers for Medicare& Medicaid Services, 2016; Hammes, Rooney& Gundrum, 2010;
Institute of Medicine, 2014; Morhaim& Pollack, 2013; Silveira, Kim& Langa, 2010).
AD and ACP policies are now widely implemented in Western countries, which reflects a
shift toward emphasizing patient values and autonomy (Carter, Detering, Silvester& Sutton,
2016; Chancellor, 2007; Department of Health, 2008). This Western practice of ACP has
subsequently influenced other cultures. Additionally, WHO includes ACP as an essential
element of improving the quality of palliative care. However, completion of an AD does not
necessarily guarantee that an individual will receive his/her desired care because it fails to
capture the myriad of unique medical situations people face. Thus, conducting an ACP
discussion, which focuses on the individual’s values and goals, is critical in order to better
understand future care preferences desired by the patient. Therefore, ongoing ACP discussions
among patients and family members may play a crucial role in protecting patients’ autonomy
and promoting quality end-of-life care.
Research on the Effectiveness of ACP Conversations
The effectiveness of ACP conversations in achieving goal-concordant care is mixed,
however (Brinkman-Stoppelenburg, Rietjens& van der, 2014; Lin, 2018; Detering, Hancock,
Reade& Silvester, 2010; Bischoff, Sudore, Miao, Boscardin& Smith, 2013); some studies
found that ACP-related activities are associated with improved quality of end-of-life care and
9
better quality of death. Additionally, other systematic reviews found strong evidence that ACP
also can reduce healthcare costs (Gleeson, Noble& Mann, 2019), and improve caregivers’
bereavement outcomes and care consistency with patients’ preferences (Malhotra, Huynh,
Shafiq& Batcagan-Abueg, 2022). However, written documentation of medical preference
showed mixed associations with compliance with patients’ medical preferences (Gleeson,
Noble& Mann, 2019). Overall, complex ACP interventions (i.e., programs that involve ACP
conversations with trained care planning professionals) were considered more effective than
written documentation alone regarding compliance with patients’ medical preferences and the
quality of life (Brinkman-Stoppelenburg, Rietjens& van der, 2014)

Factors Associated with ACP Activities
Many studies have been conducted to identify factors associated with ACP engagement.
An overview of 80 systematic reviews globally reported that legislation, institutional policies,
and cultural factors had a large impact on ACP implementation. (Jimenez, Tan, Virk, Low,
Car& Ho, 2018; Siouta, van Beek, Preston et al., 2018; Gilissen, Pivodic, Smets et al, 2017;
Lovell &Yates, 2014). At the individual level, older age, higher education, higher
socioeconomic status, and more severe health conditions, such as multiple chronic conditions,
were facilitators of ACP (Lovell& Yates, 2014; Dening, Jones& Sampson, 2011; Frost, Cook,
Heyland& Fowler, 2011). Lack of preparedness from the patient side, and the discrepancy of
disease knowledge between carers and healthcare professionals were common barriers to ACP
engagement (Lund, Richardson& May, 2015; Lord, Livingston& Cooper, 2015; Ramsaroop,
Reid& Adelman, 2007). At the healthcare provider level, physicians were reported to be the
10
primary agents initiating ACP conversations. However, physicians generally lack
communication skills and the uncertainty of disease trajectories were reported concerns
identified from multiple systematic reviews (van der Steen, van Soest-Poortvliet, Hallie-
Heierman et al., 2014; Song, 2004). Other issues were reported at the operational level
including legalistic paperwork, systems to assess and track ACP medical records, and lack of
time and resources for ACP conversations at the institutional level (Sharp, Moran, Kuhn&
Barclay, 2013; Wicher& Meeker, 2012).

Multiple Chronic Conditions (MCCs), Outpatient Visits, and ACP
As mentioned above, more severe health conditions and more healthcare interactions are
positive predictors of ACP. Although studies have shown that both subjective (self-reported)
health, objective health measures (e.g., MCCs), and healthcare interactions all impact
engagement in ACP-related activities, relatively few studies include both objective health
indicators (such as actual health problems) and subjective indicators (self-reported health status)
in their analysis, and most have neglected to examine healthcare interactions when
investigating the relationship between MCCs and ACP activities. Further, although studies
showed a positive association between physician visits and ACP-related activities, little is
known about how physician visits are associated with ACP activities when considering the
number of chronic conditions and self-reported health.

11
ACP in Taiwan
In 2015, Taiwan launched its first Patient Right to Autonomy Act, a law that allows people
who are 20 years old or older to decide on their own medical treatment. This policy has been
in effect since 2019. Based on the Patient Right to Autonomy Act, current ACP service requires
people to pre-schedule ACP by making an appointment in a hospital or home-based medical
service setting. Each participant must be accompanied by their medical proxy if they are
planning to include healthcare proxy information in their advance decisions, which is equal to
ADs. The ACP consultant teams in Taiwan include a physician, a nurse, and a social worker
or a psychologist. Hospitals charge participants approximately 100 US dollars for ACP
discussions. Unlike most health services in Taiwan, National Health Insurance does not cover
this fee. An advance directive is available after the consultation is completed and then the AD
is signed and recorded on their health insurance card. Overall, these ACP procedures are quite
new for Taiwanese people.
Currently, Taiwan does not have data on the prevalence of ACP discussions. Using ADs
as a proxy, data show that during the first three years of ACP implementation, the AD
completion rate was around 0.3% of the entire population who were 21 years old or older. Thus,
interventions to promote AD completion and ACP service use are needed.
Conversely, many studies have investigated attitudes toward ACP engagement and AD
documentation in Taiwan. Most studies point out that 60% to 80% of people in their samples
were willing to learn more about ACP, but few people have sufficient knowledge and
awareness about ACP (Chan, Li, Tseng& Hsiung, 2020; Li, Huang, Lee, Chen& Hsiung, 2021).
Furthermore, Taiwanese have few opportunities to discuss their future medical preferences
12
with their families and physicians (Chan, Li, Tseng& Hsiung, 2020; Li, Huang, Lee, Chen&
Hsiung, 2021). To address these barriers, some hospitals have modified their consultations to
include a group class. People interested in engaging in ACP can attend a general group class
first and then think about their willingness to complete an AD. Studies investigating motivators
for those who engaged in ACP observed that those who engaged in ACP: (1) pursue dying
with dignity and autonomy, (2) aim to prepare for the end of life, and (3) are reluctant to be a
burden to their loved ones. Some studies also investigated patients’ preferred forms for
engaging in ACP, such as a group or individual discussion, and the desired length of ACP
discussions. It is worth noting that fees have been reported as patients’ main concern around
ACP engagement. Some hospitals have decreased their ACP fees through subsidies or other
funding to attract more people to engage in ACP (the Reporter, 2022). However, there are no
studies to my knowledge on the difference between the uptake of ACP by fee rate or method
of ACP.

ACP among Kidney Disease Patients in Taiwan
Although several studies examined ACP engagement in Taiwan, few studies have focused
on ACP among individuals with specific diseases. Differences in the disease and symptom
trajectory patterns may influence the level of need for ACP. For example, cancer patients have
relatively better functional performance for much of the disease trajectory but decline rapidly
in the last few months of life. Meanwhile, patients with organ failure, such as end-stage renal
disease (ESRD), generally experience progressive functional decline punctuated by episodes
of life-threatening disease exacerbations. Additionally, the ultimate decline in cancer prognosis
13
(i.e. terminal stage of cancer) is easier to identify than that of ESRD. In fact, one study
identified 8 pathways to ESRD experienced by patients with chronic kidney disease (CKD),
stage 3. Further, Chen et al (2015) interviewed ESRD patients in Taiwan to understand their
perspective toward the end of life; 60% of the ESRD patients were willing to know the
prognosis of their diseases and 42.8% of them valued quality of life over quantality of life.
When researchers asked what their plans were if dialysis fails to improve their quality of life,
36.8% of the ESRD patients expressed “they don’t know”, or “they never thought about this”.
These findings reflect the lack of preparedness for end-of-life among ESRD patients and
highlight the importance of ACP utilization among the kidney disease population in Taiwan.

Taiwan reported the highest prevalence (See Figure 2) and the second-highest incidence
rate of ESRD (See Figure 3) worldwide (USRD, 2021). The prevalence rate of ESRD was
observed as 3679 person/ per million population in Taiwan. And the incidence rate of ESRD
in 2019 was reported at 529 per million in Taiwan. Additionally, it cost Taiwan’s National
Health Insurance 50 billion dollars to care for the kidney disease population, which is the
highest financial burden on the insurance system. Among these costs, 30% were spent on care
in the last 3 to 5 months of life, which may not align with the care patients prefer. ACP services
can be a strategy to prioritize patients’ preference for treatment at the end of life.

14
Figure 1.2 Prevalence of treated ESRD, by country or region, 2019 (Modified from USRD,
2020)

Figure 1.3 Incidence of treated ESRD, by country or region, 2019 (Modified from USRD,
2020)

15
Summary and Research Questions
To address the gaps mentioned above in palliative care and ACP research, this dissertation has the
following aims:
Aim 1:
Study #1 aims to investigate HBPC medical team members’ perspectives on the delivery of HBPC
in Taiwan during varying COVID-related time points (e.g., low incidence period, the Alpha variant
outbreak, and the Omicron outbreak).
Research Question
How did COVID-19 and its related policies impact the delivery of HBPC for patients,
caregivers, and HBPC team members?
Aim 2:
Study #2 investigates the extent to which the number of chronic conditions and self-rated health
predict engagement in ACP- related activities (ACP discussions, AD, and healthcare proxy
assignment) in the United States when controlling for physician visits for those who were 65 years
old or older.
Aim 3:
Study #2 investigates how the frequency of physician visits is associated with ACP-related
activities (ACP discussions, AD, and healthcare proxy assignment) in the United States when
controlling for the number of chronic conditions and self-rated health for those who were 65 years
old or older.
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Hypothesis:
In study#2, the following hypotheses are
(a) Multiple chronic conditions are independently associated with a higher likelihood of AD
completion, ACP discussions, and healthcare proxy assignment after controlling for
outpatient physician visits, perceived health, and demographic factors.
(b) Greater perceived health is independently associated with a lower likelihood of AD
completion, ACP discussions, and healthcare proxy assignment after controlling outpatient
visits, multiple chronic conditions, and demographic factors.
(c) Higher numbers of outpatient visits, as an indicator of more healthcare interactions, is
independently associated with a higher likelihood of AD completion, ACP discussions, and
healthcare proxy assignment after controlling perceived health, multiple chronic conditions,
and demographic factors.
Aim 4:
Based on the literature review above, further research to investigate ACP among kidney disease
patients in Taiwan is urgently needed. Study #3 aims to identify potential barriers and facilitators
to engaging in ACP among the chronic kidney disease population.
Research Question
What policy factors and cultural concerns facilitate or inhibit engagement in ACP conversations
among chronic kidney disease patients in Taiwan? And how do they impact ACP implementation?

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Chapter 2: Home-Based Palliative Care Team Member's Perspective on the
Impact of COVID-19
Background
Home-based palliative care (HBPC) services are one common type of palliative care
service in Taiwan. In 2019, nearly one out of four (24.3%) palliative care recipients received HBPC
(National Health Insurance Administration, 2021). HBPC services include multi-disciplinary team
member home visits (which include physicians, nurses, social workers, and psychologists),
procedures, medical prescriptions, and laboratory tests, all of which are covered by National
Health Insurance Administration in Taiwan. The frequency of home visits is based on the medical
needs of HBPC recipients. Based on a nationally representative dataset, between 2016 to 2018,
HBPC physicians, nurses, psychologists or social workers visited HBPC patients nearly 4, 5, and
6 times per month, respectively (Shih, Chen, & Huang, 2023). Compared to patients who did not
receive HBPC, HBPC recipients were more likely to die at home, had better psychological
adjustment, and were less likely to receive aggressive care (Chiang, Lee, & Kao, 2019).
Furthermore, according to a population-based observational study, receipt of HBPC in Taiwan has
been found to reduce costs of care in the last six months of life, with HBPC decedents
demonstrating $2,452 (US dollars) less in health care expenditure compared to non-HBPC
decedents (Chen, Chang& Huang, 2015). Thus, HBPC services are considered a well-developed
delivery model effective in improving the quality of end-of-life care in Taiwan.
COVID-19 (COVID), one of the most influential recent global public health emergencies,
significantly impacted assess to the health system, including palliative care, as well as the quality
of death (Bhadelia, Oldfield, Cruz, Singh& Finkelstein, 2021). COVID also brought many
18
challenges to HBPC services. These access issues contributed to the growth of telehealth and other
virtual forms of healthcare, feasible forms of care models for those with severe illnesses (Bhadelia,
Oldfield, Cruz, Singh & Finkelstein, 2021). However, HBPC relies heavily on nonverbal
communication and is predominantly delivered in person (Zheng, Head& Schapmire, 2016), which
suggests challenges in shifting the delivery model from in-person to virtual. Although some studies
have been conducted to investigate the feasibility of hybrid delivery of HBPC, all current studies
were conducted in Western countries (Bhadelia, Oldfield, Cruz, Singh& Finkelstein, 2021), and
currently, no study specifically examined the impact of COVID and related policies on the delivery
of HBPC services. Therefore, little is known about how COVID affected HBPC delivery.
Recent studies have documented some of the negative effects of COVID on palliative care
services. According to the International Association for Hospice and Palliative Care (IAHPC)
survey (2020) conducted across 14 countries, 80% of medical team members surveyed reported
that their ability to deliver palliative care was impacted. One study in the United States found that
around one-third of respondents reported negative patient consequences arising from a change in
care during the public health crisis, such as inadequate symptom management and negative
psychosocial outcomes (Rogers, Constantine, Thompson, Mupamombe, Vanin & Navia, 2021).
Additionally, palliative care personnel reported reduced access to patients in long-term care
facilities during the early years of the pandemic (Rogers, Constantine, Thompson, Mupamombe,
Vanin & Navia, 2021). In addition, during the height of COVID, there was a reduction in travel
and family visits, which also may have reduced access to social support among older adults
receiving HBPC (Wallace, Wladkowski, Gibson& White, 2020). This highlights the need to
investigate how COVID impacted provision of psychological support from HBPC healthcare
providers to HPBC recipients and their family members.
19
Taiwan initially reported low rates of COVID (20.7 cases per million in 2020), but by early
2021 the Alpha variant began spreading, and Taiwan subsequently went into a soft lockdown from
May to July 2021. In early 2022, there was another Omicron variant outbreak in Taiwan. although
the Taiwanese government did not ban HBPC visits, HBPC team members were required to limit
“unnecessary visits”. Additionally, prior to making a home visit, HBPC team members were
required to assess the patient, their family members, and their own COVID risk related to travel,
occupation (if anyone in the family had a high-risk COVID transmissive job), contact history, and
cluster history (if anyone had frequented any site considered a COVID hot spot). Therefore, patient
visitation by medical team members was limited, and performing telephone or virtual clinic visits
became more prevalent (Taiwan Centers for Disease Control, 2021). Under the changes in the
HBPC service mode, we are not sure about the perceived impacts on HBPC delivery from HBPC
medical team members.
Experts expect continued variants as well as new coronaviruses in the future (CDC, 2022).
Consequently, it is essential to understand the impact of COVID-19 and its variants on HBPC.
This study aims to investigate the impact of COVID-19 on HBPC medical team members in
Taiwan during different COVID-related time points (e.g., the low incidence period, the Alpha
variant outbreak, and the Omicron variant outbreak) and to understand the potential implications
for future pandemics.

Methods
We conducted an exploratory, qualitative study employing individual interviews with HBPC team
members. This study was approved by the Institutional Review Board of the hospital in Taiwan.
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Participants
Using purposive sampling, we recruited 14 Mandarin-speaking HBPC team members from two
medical centers in Taiwan, one located in a rural area and the other located in an urban area.
Interviews were conducted between November 2020 and August 2022.
Participants were recruited across three different COVID-related episodes: (1) low incidence
periods, (2) a soft lockdown due to the Alpha variant (May 2021 to July 2021), and (3) an Omicron
variant outbreak (March 2022 to current). Twelve participants participated in two interviews and
two participants were interviewed four times. Interviews were conducted until data saturation was
achieved.
Measures
We developed the interview protocol, which was reviewed by Taiwanese and California palliative
care research and clinical experts (Table 4-1). The semi-structured interviews were conducted to
elicit information about how the pandemic had changed the care providers' experiences in
providing HBPC. The interviews lasted between 30 minutes to one hour. Questions regarding
virtual care were added due to the changes in policies arising from different COVID-19 outbreaks.
The questions related to telehealth were taken from those in a scoping review of telehealthcare in
palliative care and modified for the current study (Namasivayam, Bui, Low, Barnett, Bridgman,
Marsh & Lee, 2022).

Procedures
21
Individual interviews were conducted via phone with HBPC medical team members, who were
eligible for this study if they had worked in the HBPC program for at least 6 months. A trained
female researcher, a doctoral student with a master’s degree in clinical psychology, conducted the
interviews. The researcher invited all HBPC team members to participate in interviews. Most
participants, except for one, had known the researcher for 3 to 5 years because of prior professional
relationships. The interviewer read the information sheet to the participants and then obtained
written consent. Once consent was received, interviews were conducted via telephone with
participants who were at their office or their home. Field notes were taken during the interviews.
All interviews were audio-recorded and transcribed verbatim.

Analytic Strategy
An inductive thematic analysis (TA), an approach that focuses beyond the semantics of the
data and works to identify the underlying meanings, concepts, and assumptions in the data
(Clarke& Braun, 2015), was used to guide the analysis of the primary themes. Two researchers
(YW, and LC) independently coded the transcripts and met to reconcile codes. Five analytic phases
were guided by Braun and Clarke (2006): (1) Familiarization: to facilitate data analysis, two
researchers independently read transcripts throughout, listened to audio recordings, and took initial
notes of observations from the transcripts. (2) Coding: to identify potential codes, two researchers
systematically labeled characteristics of the data relevant to the research questions and generated
a list of well-defined codes. During the semantic TA, two coders focused on the data that was
explicitly expressed (Smith et al., 2009). (3) Searching for themes: After codes were identified,
the researchers grouped related codes to see the patterns of the data. (4) Reviewing themes: The
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researchers had regular coding/theme meetings to review if the candidate themes fit the coded data
and the entire context of the data. The goals of the meeting aimed to achieve 90% agreement in
codes and themes. Disagreements between researchers were resolved by a palliative care expert.
(5) Writing the report. Additionally, we analyzed demographic data with Stata SE version 14.0
(StataCorp, 2015) to describe the sample.

TABLE 2. 1 HBPC Interview Protocol among Medical Team Members
History of vocational questions
a. How long have you been a HBPC team member?
b. What is your role on this team?
COVID-related policy questions
a. Does the COVID-related policy impact the delivery of HBPC? If yes, how does the
COVID-related policy change the delivery of HBPC?
b. When you take care of patients living in long-term facilities, are there any restrictions
or changes in policies due to COVID?
c. If yes, do these changes affect the delivery of HBPC? How?
1. COVID concerns
a. Are you concerned about the risk of catching and transmitting COVID when taking
care of your patients? How do you cope with that?
b. Are HBPC in-person visits be a concern during the pandemic? How do the team/you
cope with that?
c. Have your thoughts or concerns about COVID changed during the pandemic? If so,
how?
d. Does this concern affect the duration between in-person visits or the length of visits?
e. Do you think you provide the same support to your patients and their caregiver before
23
and during the pandemic? If yes, how you manage these challenges you mentioned
during the pandemic? If no, why becomes different? And how do you cope with that?
2. Telehealth factors (these questions were added after the Delta variant outbreak)
a. Does virtual visits cause any changes in service provision? If so, how?
b. Does virtual visits impact on the quality of HPBC delivery in a professionally way?
If so, how?
c. Do virtual visits cause any patient issues? For example, patients were more used to
in-person visits, so they did not use virtual care services and wait until HBPC team
member came to visit.

Results
Sample
A total of 14 participants were interviewed. Interviews averaged 45 minutes (SD= 10.21) in length.
The ages of participants ranged from 26 to 55 years old (Table 4.2). Eighty-five percent of
participants had worked in HBPC for more than 5 years. Most participants (71.4%) were married
and all participants had graduated from college. Three of the participants were physicians; three
were clinical psychologists; eight were nurses. Among nurse participants, three provided
consultations to patients/caregivers to help them enroll in HBPC services. In terms of virtual visits,
only two participants had experience with video visits; the other participants all used audio-only
visits via phone calls or telephone-based communication software utilizing virtual visits.

24
TABLE 2. 2 Sample Characteristics (N=14)
Characteristic N (%)
Age range (Mean; SD), years 26- 55 (37.64; 4.71)
Female 10 (71.4)
Marital status
Married 9 (64.3)
Single/Never married 5 (35.7)
Education
College Graduate 10 (71.4)
Postgraduate 4 (18.6)
Work area
Urban area 2 (14.3)
Rural area 12 (85.7)
HBPC work experience (Mean; SD), years 0.3-24 (12.7; 5.2)
Roles in HBPC program
Physicians 3 (21.4)
Nurses 5 (35.7)
HBPC consultant 3 (21.4)
Psychologists 3 (21.4)
Virtual care experience during the pandemic
Phone calls 13 (85.7)
Video visits 2 (14.3)

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Themes
We identified five themes related to the impact of COVID on HBPC. These themes
included 1) variation in impact across time, 2) variation in the uptake of HBPC services, 3)
difficulties in providing adequate care, 4) poor coordination, and 5) increased anxiety and grief
experienced among family members.
Theme 1: Variation in Impact across Time
Nearly all participants mentioned that the impact of COVID varied across time depending
on the incidence of COVID and/or the lockdown regulations. Most (92%) participants reported
little impact on the delivery of HBPC at the beginning of the pandemic (January 2020 to April
2021). Only one participant reported experiencing an impact on HBPC delivery during the low-
incidence period of COVID as she mentioned: “… we were very careful and intentionally
decreased in-person visits since we learned a COVID outbreak was happening abroad.” (HCP 4,
nurse) However, during the soft lockdown period (May 2021 to August 2021), most (92%)
participants perceived some impact from COVID on the delivery of HBPC services. As one team
member (HCP 2, physician) said,
“…We felt little changes until this May; the soft lockdown. We started lowering the
frequency of in-person visits and calling our patients and their caregivers instead.”
Only one physician participant perceived no difference in the quality of HBPC across the
different COVID time points because, from his perspective, he felt the pandemic only impacted
the uptake of HBPC services and not the delivery of HBPC services.

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Theme 2: Variation in the Uptake of HBPC Services
All HBPC team members reported that COVID impacted the uptake of HBPC services, but
participants had different perspectives on how it did so. More than half (71%) of participants
reported an increase in uptake of HBPC. Participants reported that patients with serious illness and
their caregivers were concerned about the risk of COVID transmission in hospitals, and
consequently saw HBPC as an opportunity to receive healthcare in their homes. Subsequently,
HBPC was seen as an alternate option for healthcare and as a way of lowering COVID transmission
risk at the same time. However, other participants noticed some patients were concerned about
COVID transmission from in-person visits and refused HBPC services. One participant (HCP 10,
HBPC consultant) reported,
“…some patients and their families would not be happy to have medical team members
come to their homes since we currently have a [COVID] outbreak [in the community]. So
they would say no to HBPC services.”
Theme 3: Difficulties in Providing Adequate Care
Within this theme, four subthemes were identified: (1) challenges in symptom assessment
and management, (2) weak connection with HBPC recipients, (3) insufficient psychological
support, and (4) lack of access to virtual care devices.

(1) Challenges in Symptom Assessment and Management
Most (91%) physician and nurse participants reported difficulties in symptom management
arising from the changes in visits due to the pandemic. Most (66%) physician participants reported
27
challenges in assessing the severity of symptoms such as wound care and pain. Some challenges
were caused by a lack of ability to conduct a physical examination (PE), a process of evaluating
objective anatomic findings through the use of observation, palpation, percussion, and auscultation.
During the virtual visits, physicians and nurses were not able to assess the patient’s symptoms,
particularly as most relied on audio-only visits. As one physician participant mentioned,
“…we confronted the challenge that we massively rely on PE to assess common symptoms
such as abdominal bloating and edema. However, we couldn’t perform PEs during the
phone call visits. “(HCP 2, physician)
Additionally, due to the decreased number of in-person visits, physicians struggled to
provide accurate medication prescriptions considering the longer duration between in-person visits
arising post-pandemic. Prior to the pandemic, healthcare providers conducted weekly visits to
HBPC recipients. However, during COVID, healthcare providers reduced the frequency of in-
person visits to once per month. This is illustrated by the comments of another participant (HCP
3, physician) who said, “we decreased the frequency of visits from once per week to once per
month. One month for progress for a patient with a terminal illness could be varied. So, we need
to provide prescriptions that cover the variations of the progress[ion] of their symptoms, which is
challenging for some of our colleagues.”
(2) Weak Connections with HBPC Recipients
Most (93%) participants reported that it was harder to build rapport with HBPC recipients
during the pandemic, with many contributing this to HBPC patients regarding HBPC team
members as a potential exposure risk to COVID, and consequently contributing to mistrust
28
between HBPC team members and patients/caregivers. As one participant (HCP 12, nurse)
mentioned,
“you can tell from their (caregivers’) faces that they hoped you completed the in-person
visits as soon as possible. Some even sprayed us with 95% alcohol to disinfect us even
though we were already equipped. It is hard to chit-chat with patients and their families.
You just wanted to finish it [the visit] quickly and leave.”
One participant (HCP 2, physician) noted that personal protective equipment contributed
to creating a physical distance from the patient, as she mentioned:
“We need to get very close to patients’ ears and talk to them loudly. Sometimes we need to
touch their hand to build connections and make them feel they are loved. However, it is
hard to do that with all the personal protective equipment.”
(3) Insufficient Psychological Support
Almost all (92%) participants mentioned that it was harder to provide psychological
support to HBPC recipients due to both their own and patient and family concerns about the
potential risk of getting COVID. The HBPC team members felt pressured to shorten the time of
in-person visits to lower the risk of COVID transmission. Some participants, including the
psychologists, mentioned that with the shortened visit time, they prioritized symptom management
over psychological support. As one psychologist mentioned,
“During the in-person visit, I tried to help our team members to assess the symptom as
soon as possible … Because I thought we should use time wisely since we aimed to shorten
29
visit time and we all agreed that symptom management would be more important for
patients.” (HCP 5, psychologist)
Table 2. 3 Organization of Themes, Subthemes, and Definitions
Theme Subtheme Definition
Theme 1: Variation in
impacts across time

Variation in perceived COVID impacts on HBPC
delivery at any time point during the pandemic.
Theme 2: Variation in the
uptake of HBPC services
Variation in the perspectives of the COVID impacts
on the uptake of HBPC services.

Theme 3: Difficulties in
providing adequate care
(1) Challenges in symptom
assessment and management
Difficulties in symptom assessment because of lack
of physical examination (PE) and decreased
accuracy of symptom assessment based on virtual
visits alone. Or difficulties in prescriptions because
of uncertainty in the duration between in-person
visits.
(2) Weak connections with
HBPC recipients
Perceived harder to build rapport with patients and
their caregivers.
(3)Insufficient
psychological support
Perceived lack of sufficient understanding of the
psychological needs of patients and their caregivers
and perceived insufficient/lack of psychological
interventions for HBPC recipients.
(4) Lack of access to virtual
care devices
Insufficient devices supply that lowered the quality
of virtual care.
Theme 4: Poor
coordination
(a) HBPC team members had disagreement about
how to provide care to patients and their families due
to the COVID concerns. (b) Less interdisciplinary
communications.
Due to COVID-related policies for long-term care
facilities, HBPC team members were not allowed to
30
visit their patient who were long-term care residents,
or they were only able to visit their patients in a
specific area which caused difficulties to assess the
original care environment the patients reside.
Theme 5: Increased
anxiety and grief
experienced among
family members
Compared to pre-covid period, HBPC team members
observed increased guilty or anxiety that caused
difficulties in coping with bereavement.

31
Insufficient psychological support also implied a lack of psychological assessment and
intervention, as one psychologist participant discussed,
“Compared to before the pandemic, I felt I knew less about my clients during the pandemic.
Not sure if their families had bereavement issues. Not sure if my clients had death anxiety.
Then of course I don’t think I can provide sufficient support for them as I know [so] little
about them.” (HCP 1, psychologist)
(4) Lack of Access to Virtual Care Devices
During the pandemic period, HBPC team members reduced the frequency of in-person
visits and increased the use of virtual care. Nearly two third (64%) of participants reported
difficulties in maintaining the same quality of care through virtual visits as that provided in in-
person visits. Four participants mentioned they only used phone calls as virtual visits because only
one video-visit device was available in the hospital where they worked.
“We only used phone calls as virtual visits. If we wanted to do video visits, we needed to
share the time with other colleagues because we only have one video-visit device here and
then we wouldn’t have enough time to check in with our patients.” One nurse participant
(HCP 9, nurse) said.
In addition to insufficient equipment supply to support video visits, nearly one-third of
participants reported that it was hard to deliver care via phone calls.
“There are still differences between in-person visits and phone calls, especially when the
physical conditions of patients dropped dramatically. But you only can help them to cope
32
with it [change in health status] via phone calls.” another participant (HCP 3, physician)
said.

Theme 4: Poor Coordination
During the pandemic, 71.4% of HBPC team members mentioned poor coordination.
For example, HBPC team members reported poor coordination among HBPC team members
because of the disagreement in care plans considering coronavirus transmission risk. HBPC team
members reported that they had differences in opinions on patient visits and how to implement
care plans. For example, one healthcare provider (#4), as a head of nurses at an HBPC program,
shared her observations:
“People had different opinions about the care plans. Some thought phone calls were
enough considering the pandemic; some did not think so. And consequently, family
members and patients were victims. we even asked for clear guidance from the CDC in
Taiwan… And they just said it’s up to you. There’s a gray area when talking about
palliative care and hospice. The COVID-related policy said considering human rights,
healthcare providers in hospice, HBPC programs, or intensive care units, should provide
individualized care, not to just follow the COVID-related regulations. But nobody knows
what the standard is.”
Additionally, 70% of our participants reported that there were no interdisciplinary team
meetings held during the soft lockdown, resulting in a lack of a more comprehensive understanding
of their patients. Additionally, HBPC team members mentioned that during the pandemic, long-
33
term care facilities all had different COVID-related policies. Some prohibited all visitors,
including HBPC team members; some allowed HBPC team members to provide in-person care
but limited them to deliver the care in a specific area, such as a lobby or outside the patients’ rooms.
This caused difficulties in coordination between HBPC team members and long-term care facilities.
As one physician participant mentioned,
“… even though they [long-term care facilities] allowed us to come, it was hard to assess
as well, because we were not able to observe patients’ rooms such as if they had sufficient
types of equipment to provide care to our patients.” (HCP 2, physician)

Theme 5: Increased Anxiety and Grief Experienced among Family Members
One-third of participants reported greater anxiety and grief among HBPC family members,
especially if their loved ones were long-term care residents, largely due to the COVID-related
policies (i.e., visitor bans in long-term care facilities). A nurse participant (HCP 7, nurse) provided
an example,
“ I had one patient dying at a nursing home but the family members were not allowed to
visit. I suggested they Facetime with the patient to say goodbye. But they told me touching
the face on the screen was totally different from touching the patient’s face to say goodbye.”
Some participants were unable to speak to the impact of the COVID-related policies on
patients and family members, stating that they did not know because they lacked an understanding
of the psychological needs of family members due to the infrequent visits with the patient/family
members.
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Additionally, 35.7% of the participants noticed that poor coordination between HBPC team
members and long-term care facilities impacted the quality of care for HBPC recipients, which in
turn impacted the patients’ family members. For example, When HBPC patients transferred from
a long-term care facility to a hospice, some family members told the HBPC team members that
they found bed sores on their loved ones, which caused guilt and sorrow among family members.
They felt they abandoned their loved ones during COVID and consequently reported experiencing
a hard time coping with grief when HBPC team members followed up.

Discussion
To our knowledge, this is the first study to investigate the impact of COVID and related
policies on HBPC services in Asia. Previous studies conducted in Western countries (Vincent et
al., 2022; Franzosa et al., 2021) specifically focused on the feasibility of providing virtual care in
HBPC. In contrast, our study aimed to conduct a comprehensive exploration of the multiple ways
in which COVID impacted care by exploring perceived challenges in the delivery and quality of
HBPC. We found two challenges in the delivery of care: difficulties in providing adequate care
and poor coordination. Also, some team members reported they observed increased anxiety and
grief experienced among family members.
Lack of access to virtual care devices was reported by all of our study participants. Only
two of them had intermittent access to video-visit devices and the remaining participants relied
solely on phone-based communication software to provide virtual care to their HBPC patients.
These findings differ from studies conducted in Canada and California (Vincent et al., 2022;
Franzosa et al., 2021) that focused on the feasibility of virtual care in areas that have constant
35
access to video-visit devices. Additionally, the lack of access to video might have contributed to
the inability to assess symptoms and provide adequate support for caregivers and patients
(Hammersley et al., 2019). The lack of visual examination of symptom assessment and intermittent
home visits might be partially associated with another finding, difficulties in providing an accurate
assessment of the prognosis, and consequently providing precise prescriptions.
Increased grief and anxiety among the bereaved during the pandemic were also reported in
our findings. Medical members in our study observed increased distress among family members
who were not unable to say goodbye to their significant others. This finding is consistent with
previous studies (Moore et al., 2020; Harasym et al., 2020) that found increased difficulties in
coping with grief and addressed the importance in understanding how the pandemic influences the
environment that might impact grief (Wallace et al., 2020). Additionally, not being able to say
goodbye and experiencing guilt have been associated with a higher likelihood of complicated grief
(Wallace et al., 2020; Li, Tendeiro & Stroebe, 2019; Otani et al., 2017). The pandemic elevated
the need for bereavement support to mitigate adverse outcomes. In sum, better psychological
interventions for grief are needed.
This study emphasized the discrepancy in care plans among HBPC medical team members
and delineated how this can potentially affect care coordination and the quality of HBPC services.
With different perspectives on how to balance the reduction of transmission risk and maintenance
of quality care, HBPC team members faced barriers in reaching agreements on care plans.
Although poor coordination was documented in some studies on how the pandemic impacted
palliative care in general (Rogers et al, 2020; Wallace et al., 2020), our study further illustrates
how different core values among the healthcare providers might impact the delivery of HBPC
36
services. To move forward, planning for improved coordination is needed for future public health
or environmental emergencies.
Combined, these themes demonstrate the trade-off that was made during the height of
COVID between the provision of high-quality care and the reduction of COVID transmission risk.
Participants reported that the challenges in providing adequate care arose from COVID concerns.
Given the goals to shorten the time of in-person visits and to reduce the frequency of in-person
visits, medical team members perceived decreased quality of care including psychological support
and symptom assessment and management. This same trade-off between quality and transmission
was found to impact the coordination of patient care among team members. As a result of the trade-
offs across all aspects of care, medical members observed increased grief and anxiety when HBPC
family members were not able to provide the support caregivers needed. Previous studies focused
on optimizing the trade-off between transmission risk and socioeconomic costs ((Irfan et al., 2022;
Kasis et al., 2022; Fazio, et al,m 2022; Echazu & Nocetti, 2020) but failed to examine the trade-
off between lowering the risk of COVID transmission and the quality of care.

Limitation
While this study aimed to identify the perceived impact of COVID on the delivery of HBPC in
Taiwan, this study was conducted in only two medical centers (one in an urban area; the other in
a rural area) and therefore findings may not generalize to all areas of Taiwan.

Conclusion
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This exploratory study identified challenges to the delivery of HBPC during a public health
emergency within a country known for high-quality palliative care ((Economist Intelligence Unit,
2010; Economist Intelligence Unit, 2015; Finkelstein, Bhadelia, Goh, Baid, Singh, Bhatnagar, &
Connor, 2022). To minimize the risk of COVID transmission, the Taiwanese government limited
the frequency of in-person visits. Additionally, some long-term care facilities prohibited all visitors,
including HBPC healthcare providers, even though Taiwan’s COVID-19 case-fatality rate was
ranked as the sixth-lowest among the Organization for Economic Co-operation and Development
(OECD) countries (Taipei Times, 2023). Our study pointed out the trade-offs between COVID
transmission-reduction policies and the quality of HBPC. Findings from this study point to the
need for greater access to virtual care technologies, improvement in existing virtual care systems,
and coordination between long-term care facilities and HBPC to facilitate better trade-offs between
disease transmission and the quality of care. With investments in these types of improvements
today, quality of care for patients at end-of-life or with serious illness is likely to be better
maintained in the face of future public health emergencies .

38
Chapter 3: The Relationship Between Multiple Chronic Conditions and
Physician Visits in Advance Care Planning Activities
(Accepted author version, published in American Journal of Hospice & Palliative Medicine)
Background
Advanced care planning (ACP) provides patients and their surrogates the opportunity to
discuss their goals, values, and priorities for healthcare, particularly in the context of serious illness
and end-of-life care (Gabbard et al., 2019). ACP conversations may include the identification of a
health care proxy (HCP), also called a Durable Power of Attorney for Health Care, to make medical
decisions should individuals become unable to speak for themselves. Decisions made during ACP
conversations also may be documented in advance directives (ADs) to be used during a serious
illness should be unable to speak for themselves. Although ACP-related activities, which include
ACP discussions, ADs, and assigning a HCP, are complicated and their effectiveness in achieving
goal concordant care is mixed, some studies have found that ACP-related activities are as- sociated
with improved quality of end-of-life care and better quality of death (Lin, 2018; Brinkman-
Stoppelenburg, Rietjens& van der Heide, 2014; Bischoff et al., 2013; Detering et al., 2010).
Additionally, a systematic review found strong evidence that ACP also can reduce healthcare costs
(Gleeson, Noble& Mann, 2019). In fact, the Centers for Medicare and Medicaid Services (CMS)
started reimbursing physicians for ACP conversations in 2016 (Centers for Medicare & Medicaid
Services, 2020). That said, Medicare beneficiaries (ie people who are 65 years old or older, or with
other specific medical conditions) can have ACP conversations covered by CMS reimbursement.
Thus, initiatives to improve earlier ACP-related activities have been identified as important goals
39
in clinical, research, and policy arenas worldwide (Centers for Medicare & Medicaid Services,
2020).
Studies have found mixed results in examining the relationship between subjective health
status and engagement in ACP-related activities. For example, some studies in North America
showed that self-perceived good health was a barrier to developing an AD (Bernard et al., 2020;
Ko, Lee& Hong., 2016; Zhang, 2013; Pollack, Morhaim& Williams., 2010). A study conducted
among 11 developed countries also found an association between better perceived health and lower
rates of ACP engagement (Sable-Smith et al., 2018). Conversely, some studies conducted in the
United States and Canada failed to identify an association between perceived health and AD
completion and electing an HCP (Noh et al., 2018; McDonald et al., 2017).
Moreover, with an increasing aging population, growing numbers of older adults have
multiple chronic conditions (MCCs), or multi-morbidities (McDermott et al., 2020; WHO, 2016),
placing them at higher risk for poor health outcomes such as depression, poor quality of life, and
poor performance in daily function (Gabbard et al., 2019; Zheng et al., 2020). Multi-morbidities
also may impact decision-making around ACP. A systematic review reported that people with
chronic disease were more likely to engage in ACP (Lovell& Yates, 2014) and that having two or
more chronic conditions was associated with higher odds of having an ACP conversation (Nowels
et al., 2019). Similar associations with chronic conditions were found in AD completion (Nowels
et al., 2019; Lovell& Yates, 2014). Additionally, having multi-morbidities also has been associated
with more healthcare interactions (Sable-Smith et al., 2018), and therefore, this may contribute to
higher odds of engaging in ACP. However, it is unknown if MCCs are an independent predictor
after adjusting for healthcare interactions.
40
Although studies have shown that both subjective (self-reported) health, objective health
measures (eg, number of chronic conditions, MCCs), and healthcare interactions all impact
engagement in ACP-related activities, relatively few studies include both objective health
indicators (such as actual health problems) and subjective indicators (self-reported health status)
in their analysis, and most have neglected to examine healthcare interactions when investigating
the relationship between MCCs and ACP activities. Further, although studies showed a positive
association between physician visits and ACP-related activities, little is known about how
physician visits are associated with ACP activities when considering the number of chronic
conditions and self-reported health for those who were 65 years old or older. Therefore, this study
aimed to address a gap in research by investigating the extent to which the number of chronic
conditions and self-rated health predicts engagement in ACP- related activities (ACP discussions,
AD, and HCP) when controlling for physician visits for those who were 65 years old or older.
Methods
Data source
We used publicly accessible data from the Health and Retirement Study (HRS) 2016 core
interview, a United States nationally representative longitudinal survey of community-dwelling
adults aged 51 years or older (Sonnega et al., 2014). The HRS has been sampling older adults since
1992 and includes an extensive array of data including work, health-related variables, financial
information, and detailed sociodemographic information on all participants. The HRS is the largest
U.S. database of health and retirement information among older adults. The interviews were
conducted largely in person, with some conducted by phone or the Internet (Heeringa& Connor,
1995). The HRS sample is recruited through a multi-stage area probability sample design
41
(Heeringa& Connor, 1995). Additionally, the HRS intentionally oversamples Black, Latinos, and
Florida State residents (Heeringa& Connor, 1995). We used the 2016 core interview because it is
the most recent HRS dataset with a weight variable to adjust for a nationally representative sample.
HRS participants complete the core interview every 2 years until death. The HRS only asked
respondents who were 65 years old or older the ACP-related questions. Consequently, 10974
participants of the 2016 core interview sample (N = 20912) were not asked ACP-related questions
and therefore not included in this analysis.
Outcome Variables
The primary outcome variables were taken from the core interview responses to questions
about whether the respondent had written instructions (this may include both AD and Physician
Orders for Life-Sustaining Treatment [POLST] forms) of their medical preferences (AD
completion), whether the respondent had ever discussed with anyone preferences for future
medical treatment if they became seriously ill (ACP discussions), and whether the respondent had
legally assigned a specific person to make medical decisions should he or she be unable to make
decisions for him/herself (HCP assignment).
Independent Variables
We included self-rated health, number of multiple chronic conditions (MCCs), and
physician visits as independent variables, controlling for demographic and socio-economic status
(age, gender, race, marital status, education, and assets). Data on physician visits in the past two
years was skewed, thus we recoded physician visits into the following categories: 0 visits; 1 to 5
physician visits; 6 to 20 visits; and more than 20 visits. Respondents’ ethnicity/race were grouped
into White, African American, and Hispanic categories. To calculate the number of chronic
42
conditions, we summed the number of primary chronic diseases self-reported by respondents, in-
cluding diabetes, cancer, heart disease, memory issues, chronic lung disease, and stroke. We
grouped the number of chronic conditions into 3 categories: no chronic conditions, 1 chronic
condition, and 2 or more chronic conditions. Self- rated health was measured by participant
responses to the following question: would you say your health is excellent, very good, good, fair,
or poor? We reverse-scored this variable so that higher scores reflected higher self-reported health.
Regarding physician visits, participants were asked how often they talked to or saw a medical
doctor (including emergency room or clinic visits) in the last 12 months.
Analysis
We conducted bivariate analysis (chi-square or t-tests) on the number of chronic conditions, self-
rated health, and socio-demographic characteristics by whether respondents indicated they had
participated in ACP, completed an AD, or were assigned an HCP. Next, we conducted multivariate
logistic regressions to investigate factors associated with AD completion, ACP engagement, and
having assigned an HCP. Analyses were conducted using Stata version 14 (StataCorp, College
Station, TX). All analyses were weighted using the 2016 core interview sample weight. Alpha
level was set at .05.
Results
Analytic Sample
Of the 9938 eligible respondents, we excluded participants with missing data on AD
completion (n = 108), ACP discussions (n = 32), assignment of HCP (n = 78), self-rated health (n
= 24), self-reported chronic conditions (n = 9), and on demographic factors (n = 76). The final
43
sample of ACP discussions, AD completion, and assignment of HCP was 9838, 9746, and 9724
respectively.
About 76.4% of respondents had discussed their medical preferences; 55.8% had
completed an AD; and 58.6% had assigned an HCP. Table 3.1 includes descriptive statistics of
each of the analytic samples and bivariate analysis between sample characteristics and our
variables of interest. Around 9 percent of our weighted sample reported having no physician visits
in the previous 2 years. Among those without physician visits, in our weighted sample only 4.03%,
3.95%, and 4.12% of them engaged in ACP, completed an AD, and were assigned a HCP,
respectively. Conversely, compared to those who did not see the doctor for the past two years,
those with 1 to 5, 6 to 20, and more than 20 physician visits had significantly higher percentages
of ACP engagement (P < 001), AD completion (p<. 001), and HCP assignment (P < . 001). Those
with more chronic conditions (P < .001), more physician visits (P<.001), and higher education (P
< .001) were more likely to have engaged in ACP discussions, to have ADs, and to have been
assigned an HCP. Conversely, greater perceived health was associated with AD
Table 3. 1 Characteristics of Analytic Sample, Respondents with AD Completion, ACP experience, and medical
proxies. Weighted percentages and weighted means with standard deviation.
ACP discussions, n=9838 AD completion, n=9746 HCP Assignment, n=9724
With ACP P-value With AD P-value With HCP P-value
Age, M(SD) 75.13 (7.93) <.001 77.55 (7.67) <.001 76.22 (8.18) <.001
Gender, %
Female 79.49 <.001 57.57 .001 59.62 .082
Male 72.46 53.51 57.30
44
Race/Ethnicity, %
White 79.33 <.001 59.36 <.001 61.44 <.001
Black 58.86 34.36 41.62
Hispanic 50.09 24.31 31.91
Educational Years, M(SD) 13.44(2.82) <.001 13.64 (2.70) <.001 13.35 (3.01) <.001
Marital Status, %
Married 76.08 NS 55.66 NS 57.14 NS
Non-married 76.79 56.06 60.43
Asset, %
Top 75% asset 78.58 <.001 59.89 <.001 61.80 <.001
Low 25% asset 64.41 39.46 45.67
Multiple Chronic Conditions (MCCs), %
No chronic conditions 63.35 <.001 45.67 <.001 48.15 <.001
One chronic condition 71.89 52.19 55.61
Two or more chronic
conditions
78.22 57.16 60.97
Self-rated Health, M (SD) 3.19 (1.02) NS 3.23 (.02) <.001 3.21 (1.02) <.01

completion (P < .001) and HCP assignment (P = .01) but not ACP discussions. In addition, those
who were White (P < .001) and in the 75% highest asset bracket (P < .001) reported higher
percentages of ACP discussions, ADs, and HCP assignments compared to their counterparts.
Compared to males, females reported higher percentages of AD completion (P = .001) and ACP
discussions (P < .001).
45
There were some differences between our analytic samples and those with missing data.
Compared to those with missing data on ACP, our ACP sample had higher assets and were more
likely to be White and have higher education. Compared to those with missing data on ADs, our
AD analytic sample was younger. There were no differences in demographic variables between
those with missing data on HCP and our HCP analytic sample.
Characteristics Associated with ACP Engagement
Table 3.2 shows that having one chronic condition (odds ratio [OR]= 1. 35, P < .01) and
two or more chronic conditions (OR=1.89, P < .001) were associated with higher odds of ACP
engagement compared to those with no chronic conditions. Regarding physician visits, compared
to those with 1 to 5 visits for the past two years, people who visited the physician 6 to 20 times
(OR = 1.24, P < .01) in the past two years were positively associated with ACP engagement.
Additionally, compared to those with 1 to 5 visits, people without any physician visits in the past
two years were negatively associated with ACP engagement (OR=.59, p<.001). However, no
significant differences in ACP engagement were found between people with 1 to 5 visits and
people with more than 20 visits in the past two years. Being female (OR = 1.59, P < .001), older
(OR = 1.06, P < .001), and more educated (OR = 1.14, P < .001) were associated with higher odds
of engaging in ACP. Also, being African American (OR = .50, P < .001) and Hispanic (OR=.49,
P < .001) and having the lowest quartile of assets (OR = . 80, P = .01) were associated with 50%,
51%, and 20% lower odds of engaging in ACP discussions respectively. However, self-rated health
was not significantly associated with engaging in ACP discussions.
Characteristics Associated with AD Completion
46
Results from multivariate logistic regression (Table 3.2) showed that, after controlling for
sociodemographic characteristics, both having one chronic condition (OR:1.21, P < .05) and two
or more chronic conditions (OR = 1.50, P < .001) were significantly associated with AD
completion compared to those without any chronic conditions. Additionally, having higher
perceived health (OR = 1.08, P < .05) was significantly associated with AD completion compared
to their counterparts. Further, compared to those with 1 to 5 visits for the past two years, people
who visited the physician 6 to 20 times (OR = 1.27, P < .001) and more than 20 times (OR = 1.21,
P < .05) in the past two years were associated with higher odds of AD completion. However, there
was no significant difference in AD completion between people who reported 1 to 5 physician
visits and people with no physician visits.
Table 3. 2 Logistic Regression Models of ACP-related Issues Among Older Adults, weighted sample
ACP (n=9838) AD (n=9746) HCP (n=9724)
OR 95% CI P>z OR 95% CI P>z OR 95% CI P>z
MCCs (Referent value: without any chronic conditions)
One chronic
condition
1.35 1.16-1.73 .002 1.21 1.24-2.70 .036 1.22 1.02-
1.48
.035
Two or more chronic
conditions

1.89

1.53-2.33

<.001

1.50

1.64-5.79

<.001

1.44

1.20-
1.76

<.001
47
Self-rated health 1.02 .97- 1.12 .586 1.08 1.06- 1.40 .011 1.07 1.00-
1.14
.033
Physician Visits (number in past 2 years; Referent value: 1 to 5 visits)
Never .59 .46- .76 <.001 .85 .66- 1.10 .206 0.81 .63- 1.05 .117
6-20 1.24 1.06- 1.44 .007 1.27 1.12- 1.45 <.001 1.27 1.12-
1.45
<.001
> 20 1.04 0.8- 1.25 .653 1.21 1.03- 1.42 .023 1.31 1.12-
1.16
.001
Female 1.59 1.38- 1.83 <.001 1.24 1.12- 1.44 <.001 1.13 1.00-
1.29
.048
Age 1.06 1.04- 1.07 <.001 1.07 1.06- 1.08 <.001 1.09 1.08-
1.10
<.001
Educational years 1.14 1.11- 1.17 <.001 1.13 1.10- 1.15 <.001 1.14 1.12-
1.17
<.001
Minority (Referent value: White)
Black .50 .47- .69 <.001 .47 .41- .61 <.001 .59 .49-.71 <.001
Hispanic .49 .35-.57 <.001 .44 .34-.56 <.001 .60 .47-.75 <.001
Married .98 .84-1.14 .955 .96 .84- 1.09 .596 .90 .79- 1.03 .132
48
Low 25% Asset .80 .64- .92 .01 .56 .44- .62 <.001 .67 .48- .67 <.001
Constant .01 .00-.02 .000 .00 .00- .00 .000 .00 .00- .00 .000

Being female (OR = 1.24, P < .001), having higher education (OR = 1.13, P < .001), and
being older (OR: 1.07, P < .001) also were associated with AD completion. However, being
African American (OR: .47, P < .001) or Hispanic (OR: .44, P < .001), and having the lowest
quartile of assets (OR: 56, P < .001) were predictive of lower odds of having an AD.
Characteristics Associated with HCP Assignment
Similarly, the results of the regression indicated that having 2 or more chronic conditions
(OR = 1.44, P < .001) and better perceived health (OR = 1.07, P < .05) were associated with higher
odds of assigning a HCP. People with 6 to 20 physician visits (OR = 1.27, P < .001), and more
than 20 physician visits (OR = 1.31, P = .001) were also associated with greater odds of assigning
a HCP than those with 1 to 5 physician visits while people without physician visits reported no
significant differences from those with 1 to 5 physician visits.
In terms of socio-demographic variables, being older (OR = 1.09, P < .001) and having higher
education (OR = 1.14, P < .001) were associated with higher odds of assigning a HCP. Compared
to White, African Americans and Hispanics both had 41% and 40% lower odds of assigning an
HCP respectively. Having fewer assets also was associated with 37% lower odds of assigning an
HCP. See Table 2.
Discussion
49
To our knowledge, this is one of the first studies to examine the association between ACP
activities and both self-rated health and the number of chronic conditions as well as physician
visits using a nationally representative sample. Our findings indicated that having more chronic
conditions was consistently associated with engaging in all three ACP-related activities, even after
controlling for sociodemographic factors and physician visits. While the finding association
between multi- morbidities and ACP activities (ie AD completion, ACP engagement, and HCP
assignment) is similar to previous international studies among different samples (Heyland et al.,
2013; Howard et al., 2018; Mann, Johnson & VanDenKerkhof, 2016; van Oostrom et al., 2014),
our study found that the number of chronic conditions was independently associated with ACP-
related activities even when including physician visits in our model. This finding highlights that
patients with more chronic conditions may be more likely to engage in ACP activities regardless
of healthcare interactions.
This is one of the first studies to examine how physician visits are associated with ACP
activities when considering the number of chronic conditions and self-reported health. Previous
studies claimed more physician visits were associated with greater odds of ACP activities (Heiman
et al., 2004). Patients prefer to have ACP conversations with physicians and insufficient time and
limited interactions between physicians and patients were identified as 2 of the biggest barriers to
ACP. However, we found a non-linear relationship between physician visits and ACP activities;
more physician visits were not associated with an increased likelihood of engaging in ACP
activities. We also found, for AD completion and HCP assignment, there were no differences
between people with no physician visits and those with 1 to 5 physician visits. This is reasonable
as AD completion and HCP assignment generally require more in-depth interaction (such as a
combination of educational materials, and patient-physician interaction) and consequently produce
50
legalized arrangements as compared to ACP discussions which can take place over several
physician visits (Ramsaroop, Reid& Adelman, 2007).
We also found that perceived health status was associated with AD completion and HCP
assignment. Interestingly, unlike previous studies, our study found that greater perceived health
was associated with a greater likelihood (instead of less likelihood) of AD completion and HCP
assignment. This may be due to the complicated nature of ACP conversations.30 “It’s too early to
talk about this” is a common reason for not engaging in ACP (Bernard et al, 2020; Ko, Lee &
Hong, 2016). However, when patients wait for a medical need for conversations about their
preferred future care, they may be too sick to initiate an ACP conversation or lack full mental
capacity (Ramsaroop, Reid & Adelman, 2007). Moreover, as health status declines, ACP
conversations take on more meaning and are closer to home, thus may be avoided by seriously ill
patients (Morrison, 2020). Additionally, medical preferences expressed when individuals are
healthy are hypothetical scenarios, which consequently may not capture the complexity of real-
time decision-making (Morrison, 2020).
Limitations
Although we used a nationally representative sample to investigate the predictive
relationship among perceived health, the number of chronic conditions, physician outpatient visits,
and ACP-related outcomes, only those who were 65 years old or older were interviewed on these
ACP-related questions. Thus, our study might not be generalizable to those who are younger than
65 years old. Additionally, our study examined the presence of written directives, such as ADs and
POLSTs, and may have excluded physician clinical notes entered into the patients’ medical records.
Finally, we only included physician outpatient visits and did not include hospitalization days in
51
our model. Thus, further research is needed to determine the role of hospitalizations in ACP
activities. Future research is also needed to better understand the quality of ACP conversations and
how quality impacts AD completion and HCP assignment.
Implications
With the growing population of older adults in the United States, patients with multi-
morbidities can serve as a flag for physicians to engage in ACP-related activities. Although good
perceived health is a common reason for not engaging in ACP activities, physicians also should
be aware that poorer perceived health can be a barrier to ACP conversations. Additionally, self-
perceived health status may not be sufficient to motivate patients to engage in ACP activities.
Interestingly, physician visits were independently associated with ACP activities, reinforcing the
need for government reimbursement (such as CMS in the U.S.) for ACP activities. Further studies
are needed to investigate the relationship between engaging in ACP-related activities and having
multiple chronic conditions and the interactions of using health care services, including physician
visits and hospital days.

52
Chapter 4: A Pilot Study on the Implementation of Advance Care Planning
(ACP) in Taiwan
Introduction
The Development of ACP Service and Related Studies in Taiwan
ACP is a process that empowers individuals, at any age, or any stage of health status, with
decisional capacities to identify their values, goals, and preferences for serious illness scenarios
(Sudore et al., 2017). ACP requires thorough communication with family and healthcare providers.
An ACP conversation can result in documentation of a person’s stated preferences or identification
of a healthcare proxy. Advance directives (ADs) are documents containing future medical
treatments and possibly designating healthcare surrogates (Brown, 2003; Galamnos, 1998;
Jennings, Kaebnick& Murray, 2005). Although the effectiveness of ACP conversations and AD
completion remain mixed, some studies have indicated ACP-related activities were associated with
increased concordance between care received and prior wishes (Wendrich-van Dael et al., 2020).
In 2015, Taiwan launched Patient Right to Autonomy Act to encourage Taiwanese, who
are 21 years old or older, to have discussions of current and future health problems and to initiate
the development of advance decisions, which are identical to ADs. This policy took effect in 2019.
Current ACP services in Taiwan require people to pre-schedule ACP conversations by making an
appointment in a hospital setting or home-based care setting. Each participant must be
accompanied by their medical proxy if they are planning to include healthcare proxy information
in their ADs. The ACP consultant teams in Taiwan include a physician, a nurse, and a social worker
or a psychologist. Hospitals charge participants approximately 100 US dollars for ACP discussions,
which last approximately 60 minutes. Unlike most health services in Taiwan, National Health
53
Insurance does not cover this fee. Therefore, this ACP delivery model is quite new and somewhat
unusual in Taiwan.
Studies of ACP conversations in Taiwan have found that 60% to 80% of participants in
their samples were willing to learn more about ACP (Chan et al., 2020; Li et al., 2021; Huang et
al., 2022). However, the AD completion rate from 2019 to 2021 was around 0.3% of the eligible
population in Taiwan (the Reporter, 2022). Studies have shown that few people have sufficient
knowledge and awareness about ACP in Taiwan (Li, et al., 2021). Furthermore, Taiwanese have
few opportunities to discuss their future medical preferences with their families and physicians
(Chan, Li, Tseng& Hsiung, 2020; Li et al, 2021). To improve ACP literacy, some hospitals have
modified their consultation settings to include a group class aimed at increasing public awareness
of and eliminating misconceptions about ACP. People, who were interested in engaging in ACP
attend a general group class first and then are asked to think about their willingness to complete
an AD. However, few studies have investigated the effectiveness of moving from one-on-one to
group consultations.
Some studies have focused on the characteristics or facilitators for ACP engagement but
are limited to those who engaged in ACP services. In a study investigating potential motivators for
ACP implementation in Taiwan, researchers found that those who engaged in ACP: (1) pursued
dying with dignity and autonomy, (2) aimed to prepare for the end of life, and (3) were reluctant
to be a burden to their loved ones (Huang et al., 2021). Some studies proposed that materials such
as an ACP booklet might be helpful but did not conduct research to support the effectiveness of
their use (Wang et al., 2015; Hsieh et al., 2011). It is worth noting that fees have been reported as
patients’ primary concern in ACP engagement. Some hospitals have decreased their ACP fees
54
through subsidies or other funding to make ACP more attractive. However, unfortunately, there
are no clinical studies on the difference between the uptake of ACP by fee rate or method of ACP.
ACP and Renal Disease Population
Taiwan has a large End-stage renal disease (ESRD) population and their related healthcare
costs are high. In 2019, Taiwan reported the highest prevalence rate (3679 persons/ per million
population) and the second-highest incidence rate (529 persons/ per million) of ESRD worldwide
(USRD, 2021). Additionally, Taiwan’s National Health Insurance pays 50 billion dollars to care
for the kidney disease population, which is the highest financial burden on their insurance system.
Among these costs, 30% were spent on care in the last 3 to 5 months of life, which may not align
with the care patients prefer. Initiating ACP discussion might be a strategy to prioritize preference
for treatment at the end of life among patients with ESRD.
Although several studies examined ACP engagement in Taiwan, few studies have focused
on ACP among individuals with specific diseases. Differences in the disease and symptom
trajectory patterns may influence the level of need for ACP. For example, cancer patients have
relatively better functional performance for much of the disease trajectory but decline rapidly in
the last few months of life. In contrast, patients with organ failure, such as end-stage renal disease
(ESRD), generally experience progressive functional decline punctuated by episodes of life-
threatening disease exacerbations. Additionally, the ultimate decline in cancer prognosis (i.e.,
progression to a terminal stage) may be easier to identify than ESRD. For example, one study
identified 8 pathways to ESRD experienced by patients with CKD stage 3. Chen et al (2015)
interviewed ESRD patients in Taiwan to understand their perspective toward the end of life; 60%
of the ESRD patients were willing to know the prognosis of their diseases and 42.8% of them
55
valued quality of life over quantality of life. When researchers asked what their plans were if
dialysis failed to improve their quality of life, 36.8% of the ESRD patients expressed “they don’t
know”, or “they never thought about this”. These findings reflect the lack of preparedness for end-
of-life among ESRD patients and highlight the importance of ACP utilization among the kidney
disease population in Taiwan.
The aim of this study was to identify potential barriers and facilitators, including policy
factors or cultural concerns, to engaging in ACP and how they impacted ACP implementation.
Method
We conducted an exploratory, qualitative study to identify potential facilitators and
challenges to engagement in ACP among individuals with CKD. Individual in-person interviews
were conducted with patients with CKD stage 3 to 5 and their caregivers. This study was approved
by the Institutional Review Board of the University of Southern California and the hospital in
Taiwan.
Participants
Using purposive sampling, we recruited Mandarin-, Fuzhonese-speaking, and five
Taiwanese-speaking patients to recruit patients’ perspectives toward ACP services. We also
recruited Mandarin-speaking and Taiwanese-speaking caregivers, who were not related to the
patient participants in our study, to understand caregivers’ perspectives on ACP services. Only
patients with CKD stage 3 to 5 and their caregivers were invited to participate. Each participant
received a 6 (US) dollar incentive in appreciation for their time. All patients and caregivers were
recruited from one medical center in Taiwan. Interviews were conducted between June 2020 and
August 2020.
56

Interview Protocol
The principal investigator (PI) developed the interview protocol (Table 3.1), with review
and input from ACP experts from California and Taiwan. The open-ended questions sought to
elicit information about the participants’ experiences and perceptions of any type of ACP
conversations and participants’ preferences for communications ACP services.
Procedures
Individual interviews were conducted in person in the hospital with patients and their
family members. A trained female researcher, a doctoral student with a master’s degree in clinical
psychology, conducted the interviews. The case manager in the nephrology medical team got
verbal consent and introduced participants to the interviewer. Sequentially, the interviewer read
the information sheet to the participant and then obtained written signed consent. Once written
informed consent was received, interviews were conducted in a waiting room or a private room in
a hospital. The interviews with patients and caregivers were conducted separately. All the
interviews were conducted in Mandarin, Taiwanese, or Fuzhonese. Interviews took twenty to
forty-five minutes to complete. Field notes were taken during the interviews. All interviews were
audio-recorded and transcribed verbatim.
Analytic Strategy
Inductive thematic analysis (TA), an approach that coders seek to focus exclusively on the
interviewee’s perspectives (Clarke& Braun, 2015), was used to guide the analysis of primary
57
themes. Two researchers (YW, and LC) independently coded the transcripts and met to reconcile
codes. Five analytic phases were guided by Braun and Clarke (2006): (1) Familiarization: to
facilitate data analysis, two researchers independently read transcripts throughout, listened to audio
recordings, and took initial notes of observations from the transcripts; (2) Coding: to identify
potential codes, two researchers systematically labeled characteristics of the data relevant to the
research questions and generated a list of well-defined codes, focusing on the data that was
explicitly expressed (Smith et al., 2009); (3) Searching for themes: after codes were conducted,
the researchers grouped related codes to see the patterns of the data; (4) Reviewing themes:
researchers had regular coding/theme meetings to review if the preliminary themes fit the coded
data and the entire context of the data. (5) Writing the report. Coders met until they achieved 90%
agreement in codes and themes. Disagreements between researchers were resolved by a palliative
care expert. Additionally, we analyzed demographic data with Stata SE version 14.0 (StataCorp,
2015) to describe the sample.
Table 4. 1 Protocol of ACP interview among CKD patients and caregivers
I. History of discussing ACP topics
a. Have you ever had an ACP discussion with a doctor? (If yes) How did you feel about it?
(If no) Why not?
b. Have you ever talked to your family about your medical care preferences?
c. Has any family member brought his/her medical preference to you? How did you feel
about it?
58
II. Communication regarding ACP topics
a. How do you feel about discussing these things with your family? How would you
communicate your preferences to your family?
b. How do you feel about discussing these things with a medical team? How would you
communicate your preferences to your medical team? How would you bring up the
topic?
III. Cultural communication preferences
a. In talking about medical preference, are there any topics or issues that are taboo and
should not be discussed?
b. Who would make you feel more comfortable in discussing ACP? Why?
IV. Policy factors
a. How do you feel about the current price for an ACP discussion?
b. How do you feel about making a specific appointment to talk about this issue? What
context will help you feel more comfortable when talking about this?
c. Who on the medical team would make you feel more comfortable in discussing ACPs?
Why this person?

Result
Sample
59
We interviewed a total of 16 participants, including 10 Mandarin-speaking, 1 Fuzhonese-speaking,
and 5 Taiwanese-speaking patients. Among these participants, 9 were patients and 7 were
caregivers. The ages of patient participants ranged from 44 to 94 years old. The ages of
interviewed caregivers ranged from 38 to 67. Almost half (43%) of the caregiver participants were
patients’ spouses. Nearly all patient participants were diagnosed with CKD for more than 10 years
(93.76%). Most participants were married (89%). Most (81.25%) had at least finished high school.
None of the participants had heard of ACP services.

Table 4. 2 Sample Characteristics (N=16)
Characteristic Patients (N=9) Caregivers (N=7)
Age range (Mean; SD), years 38-94 (58; 17) 33-63 (49; 10)
Female, N (%) 3 (33) 5 (71)
Marital status
Married 8 (89) 6 (86)
Divorced 1 (11) 1 (14)
Education, N (%)
Less than High School 3 (33) 0
High School 4 (44) 3 (43)
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College Graduate 2 (23) 4 (57)
Current Status of CKD Patients (n= 9), N (%)
CKD stage 4 3 (33)
Dialysis 2 (23)
Transplants Received 4 (44)

Themes
In this exploratory study, we identified six themes related to facilitators or inhibitors of
ACP engagement. These themes included (1) trust in the nephrology care team, (2) variation in
the communication preferences between patients versus caregivers, (3) preferences for an in-
person consultation, (4) more ACP experiences among transplant patients, (5) service fees, and (6)
attitude toward ACP. The overarching list of themes, subthemes, and definitions are shown in
Table 3.3. The comparison between the patient’s and caregiver’s perspectives was shown in Table
3.4.

Theme 1: Trust in the Nephrology Care Team
Nearly all participants mentioned their strong trust in the nephrology care team, especially
their case managers. Compared to ACP consultation teams, patients and caregivers preferred the
nephrology care team to initiate ACP conversations. However, trust appeared to be both a
facilitator and a barrier to ACP engagement because all participants reported they trusted the
61
medical care recommendations made to them by their physicians. Respondents believed that their
doctors would make the best medical decision for them. For example, as one patient mentioned,
“I don’t think ACP is necessary. My doctor told to me to continue dialysis. My quality of
life after dialysis became so poor, but my doctor said my life should be decided by God,
not me. If one day I died from dialysis, that would be God’s decision. Anything except
dialysis is not natural. So I don’t think I need ACP.” (Participant 16, patient)

Theme 2: Variation in the Communication Preferences between Patients versus Caregivers
All patients interviewed expressed the desire for ACP communication to be straightforward.
As one patient said, “I prefer for team members just to say whatever they need to express. There’s
no way to be indirect!” (Participant 10, patient). However, the majority (89%) of caregiver
participants valued indirect communication strategies over direct ones. For example, one caregiver
said, “[ACP consult team members] should not be straightforward to patients and consequently
make them think too much and get worried [about their health].” (Participant 8, caregiver)

Theme 3: Preferences for In-person Consultation
All participants, both patients and caregivers, preferred in-person consultation over phone-
based or video-based ACP consultation. As one patient participant mentioned, “In-person
consultation is better! Phone-based or video-based consultation could be skeptical. It might be a
fraud.” (Participant 12, patient)
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Theme 4: Greater ACP Engagement among Transplant Patients
Among our patient participants, all of the transplant patients had engaged in informal ACP
discussions with their caregivers or healthcare professionals at the time they decided to receive the
transplant surgery. This discussion among transplant patients and caregivers focused on whether
or not they should have this surgery and the possibility of receiving hospice care if the surgery
failed. One of the patient participants also used the impending transplant surgery as an anchor for
discussing medical treatment preferences with his daughter. “I had a future care discussion with
my daughter when I was thinking of transplants. And after the surgery, I told my daughter that if
anything happened to me that was more serious than a transplant surgery, do not use any
aggressive treatment. But if my health conditions were less severe than kidney failure and I wasn’t
able to talk, please ask the doctors to use aggressive treatments.” (Participant 13, patient)

Theme 5: Service Fees
The fees associated with ACP consultation were a concern for nearly all (94%) of our
participants. Only one patient participant did not think the service fees were a barrier to ACP access.
Some participants were surprised that the ACP service fee was not covered by national health
insurance. As one participant responded with surprise, “no coverage from national health
insurance? Why???” (Participant 10, patient). Another patient voiced her concern about the high
price as she mentioned: “Three thousand Taiwanese dollars is too much. I’ve been unemployed
for more than ten years because of my kidney failure. I have children to raise. There’s no way to
pay extra money to do this.” (Participant 14, patient)
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Theme 6: Attitudes toward ACP
Many beliefs or attitudes toward ACP were identified as barriers to ACP services
engagement. Within this theme, four subthemes were identified: (1) let nature takes its course, (2)
Good for some but not for me, (3) death is taboo, (4) it is others’ responsibility to make the best
decisions for patients, and (5) it is a family thing.
Table 4. 3 Organization Of Themes, Subthemes, And Definitions
Theme Subtheme Definition
Theme 1: Trust in the
Nephrology Care Team
Participants will follow the nephrology care
team’s advice to decide if they would engage in
ACP services because of their trust in the
medical team.
Theme 2: Variation in the
Communication
Preferences between
Patients versus Caregivers
Patient participants preferred straightforward
communication while caregiver participants
preferred indirect communication.
Theme 3: Preferences for
In-person Consultation
Compared to virtual ACP services, participants
preferred ACP service via in-person discussions.
Theme 4: Greater ACP
Engagement among
Transplant Patients
Compared to other CKD patients, more informal
ACP discussions were observed among
transplant patients and their caregivers.
Theme 5: Service Fees

ACP-related fees prevented patients from ACP
engagement
Theme 6: Attitudes toward
ACP
(1) Let nature takes its course Participants hold the belief that nature should
take its course, therefore there is no need for
ACP discussions.
(2) Good for some but not for
me
The belief that certain CKD subpopulations,
such as patients with no caregivers, need ACP
services, but not the individual themselves
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(3) Death as Taboo Death should be a word avoided or used with
caution during ACP discussions.
(4) It is Others’ Responsibility
to Make Decisions for Patients
Participants did not think patients need ACP
services because others, such as family and
physicians, that are responsible for making the
best healthcare decision for patients.
(5) It is a Family Thing Participants did not think ACP services are
needed because this discussion should be private
and discussed among family members.

TABLE 4. 4 The comparison between the patient’s and caregiver’s perspectives
Theme Patients’ Perspective Caregivers’ Perspective
Theme 1: Trust in the
Nephrology Care
Team
88% of patients trusted the advice from the
nephrology care team to decide if they
wanted to engage in ACP services. Also,
they preferred the nephrology care team to
initiate ACP conversations instead of the
ACP consult team.
67% of caregivers trusted the advice
from the nephrology care team to
decide if they wanted to engage in
ACP services. Also, they preferred
the nephrology care team to initiate
ACP conversations instead of the
ACP consult team.
Theme 2: Variation in
the Communication
Preferences between
Patients versus
Caregivers
All the patient participants preferred
straightforward communication.

All the caregiver participants
preferred indirect communication for
protecting patients’ feeling.
Theme 3: Preferences
for In-person
Consultation
All of them reported in-person consultation
preference
All of them reported in-person
consultation preference
Theme 4: More ACP
Experiences among
Transplant Patients
All transplant patients had informal ACP
discussions before.
50% of transplant caregivers had ACP
discussions experiences.
Theme 5: Service Fees 88% of patient participants felt expensive All caregivers felt expensive
Theme 6: Attitude toward ACP
(1) Let Nature Takes
its Course
43% of patient participant mentioned this. Half caregiver participants mentioned
it.
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(2) Good for some
but not for me
ACP services are for other CKD patients,
including those sicker) or for those older
(participant 13, patient).
ACP is for CKD patients with no
families or with no healthcare
professionals to consult with
(participant 2, caregiver); for CKD
with patient living in long-term care
facilities (participant 3, caregiver);
for sicker patients (participant 4,
caregiver)
(3) Death as Taboo Talking about death is taboo for older adults Talking about death is like a curse for
older adults
(4) It is Others’
Responsibility to
Make Decisions for
Patients
43% of patient participants mentioned it is
physicians’ or families’ calls for making
decisions for them.
One caregiver participant mentioned
family caregivers, instead of patients,
should make the decisions for
patients.
(5) It is a Family
Thing

(1) Let Nature Takes its Course
About 30% of our interviewees did not think ACP discussions are needed because patients should
go with the flow and let nature takes its course. That is, one should not interfere with the natural
course of the disease. As one caregiver participant said, “discussing the future care scenarios just
annoys patients. Why bother? Life is full of uncertainty. I’m a Buddhist and impermanence is what
we need to learn. No need for ACP discussion. Just accept what comes to you. And let [it] go.”
(Participant 6, caregiver)
(2) Good for some but not for me
Interestingly, 43% of participants, including patients and caregivers, showed no motivation to
engage in ACP services. These participants clarified that they were not the target population that
needs ACP. For example, some said they assumed only older adults, long-term care facility
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residents, people with no family caregivers, patients with no healthcare professionals to consult
with, or those with more severe health conditions need ACP. As one patient participant mentioned:
“I value this service but this is not for me. I think this service is more suitable for long-term care
residents.” (Participant 13, patient)
(3) Death as Taboo
When clarifying cultural concerns or words that should be used with caution, 33% of our
participants mentioned older people in Taiwan might think this discussion would negatively
impact their health. Some participants suggested using the term leaving as an alternative word to
death. Another patient participant mentioned the awkward discussion she had with her mother-in-
law:
“Older Taiwanese people are more conservative. They don’t talk about death. Yeah, when I
talked about future prognosis and death with my mother-in-law, she asked me to stop. [She said]
This will bring bad luck. Also, she thought talking about death means I’m not brave enough.”
(Participant 9, patient).
(4) It is Others’ Responsibility to Make Decisions for Patients
Just under half (43%) of our participants mentioned that ACP services are not necessary
because it is others’ responsibility to make the best medical decisions for them. Whether it is the
family caregivers or the healthcare professionals, these respondents felt the responsibility for
decision-making around their treatment belonged to others. Some thought their family members
should take care of this, not them. As one patient stated, “I don’t need ACP. It’s my children’s
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responsibility to figure out which treatment is the best for me…No. No need to worry about this.
Let my children worry about this.” (Participant 11, patient)
Additionally, some participants claimed it is the physician’s responsibility to make the best
decisions for them because they are more experienced and knowledgeable. As one caregiver
participant said, “Why bother? Just listen to whatever the doctor suggests. …Discuss?? No, it’s
not discussions. They give suggestions and you listened to them.” (Participant 4, caregiver)
(5) It is a Family Thing
Some participants thought there was no need for professional ACP services because this
discussion should be a private discussion within families. For example, as one participant said,
“…no need for ACP services. Our families will take care of this.” However, when further clarifying
whether these individuals have had an ACP discussion with their family, most of them, stated that
they have never talked about future care scenarios. According to one caregiver participant, “I don’t
think we need this conversation. We’re married. We know each other so well. I know what he wants
without asking him.” (Participant 5, caregiver). Thus, although some stated these conversations
should be held among family members, the vast majority have not actually had this conversation,
nor do they plan to do so in the future.
Discussion
To our knowledge, this is the first study to investigate the perspectives of ACP services in
Taiwan among patients with CKD and their caregivers. The few studies that have been conducted
did not specifically focus on the kidney disease population (Martina et al., 2020; Lin et al., 2020;
Lin et al., 2021), nor did they explore potential barriers and facilitators for patients with CKD to
have a better understanding of the attitude, beliefs, and thoughts toward ACP services. From our
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study, we found attitudes toward ACP create barriers to ACP services. Additionally, we found
some differences in attitudes and communication preferences towards ACP between patients
versus caregivers. Additionally, transplant patients had greater awareness of the importance of
ACP and were more likely to have ACP discussions than non-transplant patients did. Preferences
for ACP services and fee concerns were also addressed in our study.
Medical paternalism is another cultural attitude found in our study. Strong trust in
nephrology teams and regarding medical decisions as a healthcare professional’s responsibility are
widely held beliefs. Similar to a study in Hong Kong (Chan & Pang, 2010) and another qualitative
study in Southern Taiwan (Chen et al., 2021), patients did not regard feedback from physicians as
a discussion but rather as a recommendation or guidance. Enhancing awareness of the autonomy
of patients may be important in implementing ACP services in Taiwan.
Some of the attitudes expressed toward ACP among our participants were grounded in
Buddhism. For example, we found that multiple participants mentioned letting nature take its
course under the context of impermanence and Buddhism. The impermanence within the
Buddhism context is that everything is changing so the only way to face this is to let nature take
its course. This differs from the concept of autonomy and agency in Western culture, in that some
Buddhists believe in letting go of autonomy and letting God make decisions for them. Additionally,
patients and caregivers regard illness and prognosis as unpredictable, and impermanence a part of
life. Thus, some people held the belief in letting nature take its course, considering it is unnecessary
to think about prognosis and planning when they cannot concisely predict everything. This finding
is contradictory to a study using Japanese nationally representative data, which found that those
with Buddhist beliefs had higher odds of ACP discussions (Miyashita et al., 2021). The opposite
finding in the current study may reflect the unique nature of Buddhism in Taiwan. Although the
69
Religious Affairs Section of the Ministry of the Interior estimates that 35 % of the Taiwanese
consider themselves Buddhists, 93 % of Taiwanese reported being a mixture of Buddhist and
Taoist (U.S. Department of State, 2020).
In our study, we also found that some patients and caregivers did not perceive themselves
as being in need of an ACP conversation category, rather they felt they did not need ACP. They
all pointed out that ACP services are medical services for at-risk subgroups, referring to different
CKD subpopulations. This finding might be associated with collectivism thinking patterns. Under
the collectivist culture, people tend to think of themselves in a group and evaluate their status based
on where they stand in a norm. This may have influence our participants' responses. For example,
some participants said they do not need ACP because ACP is for people who live in long-term
care facilities/ without families/ older adults, groups that they were not part of. In Taiwan,
especially in rural areas, people are profoundly influenced by collectivism. Thus, to implement
ACP services, ACP educational materials should focus on educating suitable populations and
improving their health literacy to allow them to regard this service as needed.
It is noteworthy that families might have leading roles in medical decision-making, as some
patient participants thought it is the families’ responsibility to make the best healthcare decision
for them. Although many ACP studies in Asia have found this same theme (Martina et al., 2021;
Park et al., 2018; Koh, Kim & Kim, 2016), most studies emphasized the lack of alignment with
patients’ preferences because healthcare professionals prioritized their families’ preferences over
patients’ (Martina et al., 2021; Park et al., 2018). In our study, we found some patients believed
that making medical decision for a loved one should be a form of responsibility for families. Thus,
they perceived no need for ACP discussions as it was the expectation that family members would
be the decision-makers if there was a future need. Additionally, some participants thought that
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ACP discussions should be private discussions within families, rather than involving medical
professionals. Interestingly, few participants who stated that these are private family conversations
had actually had this discussion or planned to have one in the future.
Death as taboo was identified as one of the concerns of ACP services. Some participants
suggested using the term “leaving” instead of “death”. This finding is consistent with many studies
across cultures (Ke et al., 2017; Cheng et al, 2018; Graham-Wisener et al., 2022). Better
interventions to overcome this taboo are needed.
Our findings suggest in-person ACP consultation is feasible, but ACP consult teams should
adopt different communication strategies toward patients versus caregivers; straightforward
communication with patients and indirect communication with caregivers. However, clinical
observations from healthcare professionals conflicted with our findings. From conversations with
healthcare providers in ACP consultant teams, they reported that while patients believe that they
can accept straightforward communication, they were not responsive to that approach. Further
studies are needed to understand the best methods of communicating ACP with patients.
We found that more ACP discussions occurred among transplant patients and their
caregivers because they were aware of the importance of ACP during a serious surgery. This
finding is different from a United States study using a national registry of patients with ESRD,
which found people who had engaged in the transplant process were less likely to complete ADs
(Butler et al., 2020). To better implement ACP services, ACP consultant teams should be aware
of non-transplant patients might not perceive ACP as important.
Another thing we found in relation to ACP discussions among transplant patients is that
although these discussions included if they wanted to have do-not-resuscitate (DNR) and if they
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preferred hospice care, no participant in our study considered refusing dialysis or terminating
dialysis as an option. According to one study that included interviews with patients with ESRD
and their caregivers (Sellars et al., 2018), ACP discussion with healthcare providers helped patients
and caregivers realize terminating dialysis could be an optional medical preference. Thus, the
involvement of medical team members during ACP discussions might expand the discussions and
further assist patients with CKD to explore their medical preferences. Future studies are needed to
investigate if ACP services impact the rate of dialysis withdrawal and improve the quality of care
at the end of life among patients with CKD in Taiwan.
Our study also addressed the importance of re-considering ACP service fees and evaluating
the possibility of including them as part of national health insurance. Consistent with multiple
previous studies on ACP in Taiwan, fees have been identified as the main reason for the low uptake
of ACP (Lin et al., 2020; Lin et al., 2021; Liu et al., 2022). Furthermore, based on a national survey
in Taiwan (National Health Insurance Administration, 2011), people with CKD were more likely
to experience financial strain compared to those without CKD. Thus, patients with CKD and their
caregivers might be less motivated to engage in ACP services as a result of cost. To move forward,
better financial incentives should be considered to promote ACP service for the CKD population.
Limitation
While this study aimed to identify the barriers and facilitators to ACP implementation in
Taiwan, it was conducted in just one medical center in a rural area. Therefore, findings may not
generalize to all areas of Taiwan. Additionally, some interviews were conducted in a waiting room
instead of an office. This might have caused distraction and influenced the quality of the interviews
and the responses to the interview questions.
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Conclusion
This study identified challenges and facilitators to ACP implementation among individuals
with CKD in Taiwan. Findings demonstrated the fees charged ACP should be re-considered for
those with CKD. At the healthcare interaction level, healthcare professionals should be aware of
cultural concerns related ACP and provide better education to patients with CKD and their
caregivers to make them not feel excluded from the target populations in need of ACP.
Additionally, to assist patients with CKD to become more willing to engage in ACP, ACP
conversations should be initiated by nephrology teams rather than specific ACP consultant teams.
Future research should focus on developing a culturally feasible model of ACP implementation.

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Chapter 5: Discussion, Limitations, & Conclusion
This dissertation aimed to investigate the role of healthcare interaction under certain
contextual factors on ACP-related activities engagement and home-based palliative care (HBPC).
Informed by the Behavioral Model of Health Services Use (Aday& Andersen, 1974; Anderson,
1995) and prior findings across the field of gerontology, sociology, and public health, this
dissertation provided insights into how engagement in ACP-related activities was facilitated or
impeded by health conditions and healthcare interactions under different sociocultural contexts.
Each chapter investigated different variables (i.e. predisposing characteristics, enabling resources,
and need factors) guided by the Behavioral Model of Health Services Use for ACP conversations
or HBPC services. Chapter 2 explored the relationship between ACP-related activities and need
factors (i.e. the number of chronic conditions, the frequency of outpatient visits, and perceived
health) in the United States. Chapter 3 identified need factors, predisposing characteristics such as
beliefs influenced by collectivism, Buddhism, and Confucianism, and enabling resources such as
ACP-related policies as potential challenges and facilitators to ACP services. Chapter 4 explored
how public health emergencies impact the delivery of HBPC via changing enabling resources (i.e.
availability to virtual care and the accessibility of in-person delivery) and need factors such as
motivation to enroll in HBPC within a country known for high-quality palliative care. Primary
findings support previous studies that identified negative outcomes arising from COVID and
COVID-related policies on palliative services. This study further highlights the importance of
improving the quality of virtual and remote care so that these mechanisms can be more easily
deployed during public health emergencies and expand reach to remote areas.
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This dissertation provides guidance to healthcare providers about (1) the characteristics of
the population associated with engagement in ACP-related activities, and (2) cultural beliefs and
health factors that may influence engagement in ACP. First, although previous studies have found
that having multimorbidities is an indicator of ACP engagement, little is known about how the
effect of poor perceived health and frequent outpatient visits that may contribute to more
opportunities to initiate ACP conversations, impacts ACP and relates to the presence of
multimorbidities. Chapter 2, based on nationally representative data, clarified the relationship
among multi-morbidities, perceived health, and outpatient visits for older Americans. Chapter 2
provided insights for United States healthcare professionals around initiating ACP conversations,
specifically that physicians should consider initiating ACP conversations early when patients
perceived their health as fair or good because our findings demonstrate that poorer perceived health
can be a barrier to ACP conversations.
Payment for ACP conversations has been an important factor in ACP engagement, both in
the United States and in Taiwan. Guidance from the American College of Physician Ethics Manual
states that “Physicians should routinely raise advance planning with adult patients with decision-
making capacity and encourage them to review their values and preferences with their
surrogates.“ However, before the Centers for Medicare and Medicaid modified the payment rules
to include ACP, the lack of reimbursement had been regarded as a barrier in that there was no
recognition of healthcare providers’ effort and time to engage in ACP conversations. (Hartner,
2015; Jacob, 2015). Thus, CMS initiated ACP reimbursement rules in the United States in 2016,
to begin to provide compensation for healthcare providers. Chapter 2 found that 6 to 20 outpatient
visits over the past two years were associated with the highest odds ratios of ACP activities.
Additionally, Chapter 2 pointed out that patients with physician visits were more likely to engage
75
in ACP activities. This finding indirectly supports the policy of government reimbursement (such
as CMS in the U.S.) to support physicians in conducting ACP activities. Consistent with the
previous findings in Taiwan and in the United States, Chapter 3 highlighted the importance of re-
considering patient-level payment structures for ACP conversations in Taiwan. The unexpected
high cost of engaging in ACP conveys the message to patients that ACP is not regarded as
“standard care.” The Taiwan Government should consider incorporating ACP into standard care
to increase patient incentives to engage in these discussions. Thus, policymakers should reconsider
changing the ACP payment model in Taiwan.
The importance of cultural contexts, beliefs, and attitudes toward ACP engagement in
Taiwan also was discussed in Chapter 3. This dissertation provided specific insights into the
implementation of the ACP model in Taiwan. Findings from this chapter suggest healthcare
professionals in Taiwan should be aware of the impact of cultural beliefs and their potential to
hinder ACP initiation. These beliefs may be influenced by Buddhism, Confucianism, paternalism,
and collectivism. For example, to implement ACP in a Buddhist country such as Taiwan,
healthcare professionals should consider that some patients hold the perspective of letting nature
take its course, rather than engaging in ACP ahead of a serious medical condition or situation.
Thus, physicians may want to align the conversation with this value, by clarifying that ACP
conversations do not mean that one is interfering with the natural course of the illness, but rather
offers another option to prepare for the impermanence of illness. That said, since anything can
change, patients may regard ACP as an opportunity to have conversations with healthcare
professionals about their core values based on future care scenarios, rather than make specific
medical plans regarding future care. This approach may assist Buddhist patients and their
caregivers to be more willing to engage in ACP conversations.
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Existing research has addressed the importance of eliminating misconceptions in
promoting ACP engagement across cultures, but these studies focus solely on identifying
misconceptions themselves. This dissertation further illustrates the cultural thinking patterns
behind these misconceptions about ACP. Thus, healthcare professionals should be prepared to
address these belief, such as “good for some but not for me”, and to offer more comprehensive
education on the value of ACP services for patients with CKD, in general. Thus, this dissertation
provides directions for education to help improve ACP literacy in Taiwan to help the public
perceive ACP as a more inclusive activity that all adults in Taiwan should engage in.
Although ACP has gained attention in Asia and the family-centric feature of ACP
conversations in Asia has been acknowledged (Martina et al., 2021; Hirakawa et al., 2018; Tay et
al., 2017; Koh, Kim & Kim, 2016; Foo et al., 2013, the majority of studies focused on either (1)
the family taking the patient’s role to make major medical decisions (Koh, Kim & Kim, 2016; Foo
et al., 2013), or (2) the effectiveness of family-centric ACP conversations (Tay et al., 2017).
Relatively little research has been conducted on patients’ perspectives on family-oriented ACP
conversations. The primary findings from Chapter 3 demonstrated that patients might not be
accustomed to making medical decisions on their own. Healthcare professionals should be aware
of this and facilitate the communications between patients and their families to affirm all the
decisions are made together and determine if the families' voices are aligned with patients’ wishes
about future care scenarios.
This dissertation also holds implications for policymakers. First, our findings that more
physician encounters did not guarantee a higher likelihood of engagement in ACP-related activities,
policymakers should focus on funding to train physicians to initiate ACP conversations earlier in
disease trajectories. Second, this dissertation suggests policymakers in Taiwan should reconsider
77
the fee structure associated with ACP services to remove the financial barriers for patients to
engage in ACP services. Our findings suggest that patients with CKD have strong trust in
specialists, such as nephrology care teams. Consequently, expanding ACP services to specialists
might encourage more patients and their caregivers to engage in ACP services. Lastly,
policymakers should focus on improving the availability of virtual and remote care so that these
mechanisms can be easily deployed during public health emergencies and provide other option to
extend care for the Taiwanese population beyond public health emergencies.
Future Directions
Future research is needed to further clarify why having 6 to 20 healthcare encounters in the
previous two years is associated with a higher likelihood of the engagement of ACP. For example,
future research is needed to understand the characteristics, such as access to healthcare and types
of healthcare insurance, of these people with 6 to 20 outpatient visits for past two years.
Additionally, future research is needed to explore the impacts of other types of healthcare
interactions, such as hospitalizations and visits to specialists, on ACP engagement. Future studies
also should examine the effectiveness of national health insurance coverage of ACP services and
co-payment of ACP services to further improve ACP implementation. Finally, conducting research
testing different types of virtual care, technology, and equipment to provide remote care to HBPC
patients in Taiwan may help understand the potential for expanding remote access to HBPC.
Limitation
There are a few limitations to this dissertation. First, Chapter 1 used cross-sectional data,
which does not imply a causal relationship. Future studies using a longitudinal research design
would provide better insights into the temporal ordering of the relationship among outpatient visits,
78
subjective health, and multimorbidity. Additionally, samples conducted in the last two chapters
both consisted of Taiwanese. To further explore ACP implementation in non-western countries,
future studies should include more people from diverse racial/ethnic backgrounds in Asia and
explore whether the findings remain similar or vary.
Conclusion
In sum, this dissertation has provided insights into how patients in the United States
engaged in ACP conversation when considering their perceived health, multimorbidities, and
physician encounters. Perceived health, multimorbidity, and outpatient visits were independently
important for ACP engagement. This dissertation also provides some directions on improving the
uptake of ACP in Taiwan. As payment is one patient-level barrier to ACP delivery in Taiwan,
policymakers should reconsider the changes in payment rules for ACP services. Additionally, this
dissertation suggests culturally competent communication skills are important in initiating ACP
conversations in Taiwan. Lastly, this dissertation also calls for better access to virtual care for
HBPC in Taiwan. As the global population is aging, this dissertation might provide new directions
to improve the quality of end-of-life care among different cultures.

79
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Asset Metadata

Creator Wang, YuHsuan (Olivia) (author)

Core Title Eliciting perspectives on palliative care: outpatient visits, advance care planning, and the impact of COVID-19

School Leonard Davis School of Gerontology

Degree Doctor of Philosophy

Degree Program Gerontology

Degree Conferral Date 2023-08

Publication Date 08/09/2023

Defense Date 06/05/2023

Publisher University of Southern California. Libraries (digital)

Tag advance care planning,multiple chronic conditions,OAI-PMH Harvest,palliative care

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Enguidanos, Susan (committee chair), Chen, Pei-Lin (committee member), Jacobson, Mireille (committee member)

Creator Email squibbleshsu@gmail.com,wang385@usc.edu

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