Palliative and Supportive Care (2015), 13, 1711 –1720.

# Cambridge University Press, 2015 1478-9515/15

doi:10.1017/S1478951515000802

End-of-life care research in Hong Kong: A systematic

review of peer-reviewed publications

CHONG-WEN WANG PH.D., AND CECILIA L.W. CHAN, PH.D.

Centre on Behavioral Health, The University of Hong Kong, Hong Kong
(RECEIVED April 6, 2015; ACCEPTED April 15, 2015)

ABSTRACT
Objective: This systematic review aimed to examine end-of-life (EoL) care research undertaken
in an Eastern cultural context—Hong Kong—with the hope of better informing EoL care
professionals and policy makers and providing lessons for other countries or areas that share
similar EoL care challenges.
Method: Eight databases were searched from their respective inception through to August of
2014. All of the resulting studies conducted in Hong Kong and relevant to EoL care or palliative
care were examined. The included studies were assessed with respect to study design, care
settings, participants, research themes, and major findings.
Results: Some 107 publications published between 1991 and 2014 were identified. These
studies were undertaken at a range of places by different professionals. Of the total, 44 were led
by physicians, 36 by nurses, 17 by social workers, and 10 by other professionals. Participants
included both inpatients and outpatients with different illnesses, nursing home residents, older
community-dwelling adults, deceased individuals, care staff, and informal caregivers. A total of
13 research themes were identified: (1) attitudes to or perceptions of death and dying; (2)
utilization of healthcare services, (3) physical symptoms or medical problems; (4) death anxiety
or mental health issues; (5) quality of life; (6) advance directives or advance care planning; (7)
supportive care needs, (8) decision making; (9) spirituality; (10) cost-effectiveness or utility
studies; (11) care professionals’ education and training; (12) informal caregivers’ perceptions
and experience; and (13) scale development or validation.
Significance of results: While there has been a wide and diverse range of research activities in
Hong Kong, EoL care services at primary care settings should be strengthened. Some priority
areas for further research are recommended.
KEYWORDS: End of life, Palliative care, Research, Systematic review, Hong Kong

INTRODUCTION care quality, knowledge and skills, competency, deci-

sion making, and psychosocial and spiritual con-
EoL care is an important aspect of healthcare
cerns. Given the nature of terminal illnesses,
worldwide that is becoming increasingly more vital
palliative care rather than curative care at the end
and is emphasized by healthcare and social care
of life has been highlighted and promoted in recent
professionals, dying persons, family members, and
years, which is an approach that can improve the
the general public (Department of Health, 2008).
quality of life (QoL) of patients and their families fac-
However, many issues and challenges may exist
ing the problems associated with a life-threatening
in providing quality EoL care to individuals with a
illness through prevention and relief of suffering as
terminal illness, including accessibility, coverage,
well as treatment of pain and other physical, psycho-
social, and spiritual problems (WHO, 2002). With the
Address correspondence and reprint requests to: Chong-Wen rapidly aging population, improving EoL care has be-
Wang, Centre on Behavioral Health, The University of Hong
Kong, 5 Sassoon Road, Pokfulam, Hong Kong. E-mail: wangcw@ come a priority of public policy and healthcare strat-
hku.hk egies in many countries (Department of Health,
1711

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 1712
2008; 2011; Giovanni, 2012), not so much from a cost
perspective but more in terms of quality (Carlson,
2010).
Hong Kong is a highly developed metropolitan
area. However, a report by the Economist Intelli-
gence Unit (2010) indicates that the quality of death
in Hong Kong ranks 20th among 40 selected loca-
tions from around the world. So there is plenty of
room for improvement. Hong Kong is also embracing
a rapidly aging population with limited resources.
The number of persons aged 65 and above accounts
for 13% of its population, and this number is expected
to increase to 30% by 2041 (Census and Statistics De-
partment, 2014). Compared to 2011, Hong Kong’s el-
derly dependency ratio will double by the year 2026
(18.8 vs. 37.5%) and almost triple by the year 2041
(54.9%) (Cheng et al., 2013). Demand for long-term
care services will rise considerably for the foresee-
able future (Social Work Department, 2013). In-
creased numbers of older persons and extended life
expectancy coupled with the impact of chronic illness
on individuals’ physical, psychological, and social
well-being suggest that the demand for EoL pallia-
tive care services will increase not only in terms of
quantity but also quality (Williams et al., 2010).
Though there are many cases of clinically relevant,
collaborative, interdisciplinary, and strategic ap-
proaches to palliative care research in Hong Kong,
this information is greatly fragmented. To inform
evidence-based practice and policy making, an exam-
ination of the available evidence generated from sci-
entific research conducted in the region seems
necessary, since the state of EoL care research is
closely linked to the development of EoL care services
(Sigurdardottir et al., 2010).
The purpose of our review was thus to provide a
systematic and thematic analysis of peer-reviewed
journal articles that describe EoL care or palliative
care studies undertaken in Hong Kong and to exam-
ine the characteristics of the studies in terms of
venue, sample, research methodology, and outcomes.
Not only would such an analysis be helpful for
improving EoL care services and identifying priority
areas for future research, but the findings may pro-
vide lessons for other regions or nations that share
similar EoL care challenges.
METHODS
Search Strategy
The following electronic databases were searched
from their respective inception through August of
2014: AMED, CINAHL, PubMed, MEDLINE, SocIN-
DEX, PsychINFO, and Web of Science. The search
terms used included: “palliative care,” “hospice care,”
https://doi.org/10.1017/S1478951515000802 Published online by Cambridge University Press
Wang & Chan
“terminal care,” “end-of-life care,” “advance directive,”
“advance care plan,” “dying,” “death,” “end of life,”
“terminal,” “terminally ill,” “palliative,” “hospice,”
“Chinese,” and “Hong Kong.” We searched the elec-
tronic databases for titles and abstracts containing
these terms. No limits were imposed on participant
characteristics, research design, outcome measures,
or language. In addition, Google Scholar was searched
using Chinese translations of the aforementioned
terms for relevant articles published in Chinese. The
reference lists of all included studies and other
archives of the located publications were searched by
hand for further relevant articles.
Inclusion and Exclusion Criteria
Given the volume of documents initially generated,
the search was restricted to full-text articles that
were published or might be published in peer-
reviewed journals. Publications were selected based
on the following inclusion criteria: (1) original stud-
ies relevant to EoL care or palliative care; (2) studies
conducted among Chinese participants in Hong
Kong; (3) unpublished theses examined by reviewers;
and (4) research outputs with either qualitative or
quantitative data. In order to maximize the type
and range of relevant research, studies drawing on
subsamples in Hong Kong were also included. The
exclusion criteria included: (1) nonoriginal publica-
tions such as editorials, commentaries, newsletters,
literature reviews, and discussion documents; (2) bi-
omedical studies; (3) studies on animals; (4) studies
on mortality and associated factors; (5) studies nei-
ther related to death and dying nor caregiving; (6)
studies on bereavement or grief that occurred after
death; (7) studies conducted among Chinese outside
of Hong Kong; (8) case reports or conference proceed-
ings; and (9) duplicates.
Data Extraction
All references generated through the searches were
exported into EndNote, and duplicates were elimi-
nated. The titles and abstracts were manually re-
viewed. Irrelevant items were excluded according to
the exclusion criteria. If a reference was potentially
eligible for inclusion, the full text was retrieved for
further screening. For each of the included studies,
data were extracted onto a customized data-extraction
sheet, including the following information: research
aims, study design, participants, sample size, outcome
measures (where applicable), and major findings.
The included studies were categorized according to
the types of study design, samples, and outcomes
or research themes. Given that some studies
may have had multiple themes, the primary aim
and major outcomes of the study were utilized for
 End-of-life care research in Hong Kong
Fig. 1. Selection process for included studies.
categorization. A very few studies were allocated into
multiple categories. Where uncertainty existed, the
full text of the article was carefully reexamined and
recategorized.
RESULTS
Our searches identified 595 potentially relevant pub-
lications, and 452 records were removed after screen-
ing the titles and abstracts. Full reports of 143
publications pertaining to EoL care or palliative
care issues were acquired, and 36 articles were fur-
ther excluded as they were nonoriginal publications,
studies not related to EoL care, or studies outside of
Hong Kong. Consequently, 107 articles were included
for the final review (Figure 1).
Figure 2 depicts the number of publications in dif-
ferent years. Of the included studies, 44 were led by
physicians, 36 by nurses, 17 social workers, and 10
by other professionals (including psychologists,
physical therapies, occupational therapies, and
counselors) (Figure 3). In terms of research design,
72 studies were quantitative and 30 qualitative
in nature (Table 1). Five studies were conducted
with mixed methods. Questionnaire surveys and
clinical records were the primary quantitative re-
search methods employed, while the most frequent-
ly employed qualitative methods were individual
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1713
and focus-group interviews. The vast majority of
included studies were descriptive. Such studies in-
cluded qualitative studies, cross-sectional surveys,
longitudinal surveys, retrospective data analyses,
and clinical data mining. Some 19 studies evaluated
the effectiveness of different intervention or educa-
tion programs, of which 9 focused on healthcare
delivery or services, 5 on supportive care, 2 on
psychoeducation, and 3 on education and training.
These studies included single-arm studies, con-
trolled trials, some retrospective studies or audits,
and a few qualitative studies.
A range of samples were investigated in the in-
cluded studies, including both inpatients and outpa-
tients with different illnesses (most of the studies
focused on cancer and a small number on noncancer
illnesses, including end-stage renal disease, chronic
obstructive pulmonary disease, and acute myeloid
leukemia), care home residents, older community-
dwelling adults, deceased individuals, healthcare
professionals or students, and family caregivers
(Table 2). There was wide variation in terms of sam-
ple size. For qualitative studies, sample sizes ranged
from 6 to 96, with a median of 23. For quantitative
studies, the sample sizes ranged between 10 and
2874, with a median of 121. These studies were
undertaken in a broad spectrum of settings, includ-
ing hospitals, hospice units, nursing homes, care
 1714 Wang & Chan

Fig. 2. Number of publications in different years.

homes, the community or homes, and generalist and
specialist services.
Table 3 presents the research themes that
emerged in the included studies, which were based
on research focuses and primary outcome measures.
As can be seen, 13 themes could be identified. Specif-
ically, 18 studies examined physical symptoms or
medical/functional problems, with pain and fatigue
being the two most common symptoms. Some 14
studies examined older adults’ attitudes to or percep-
tions about death and dying, most with a qualitative
research design. The research concepts emerged in
these studies included “good death,” “dying with dig-
nity,” “expected beneficial outcomes from palliative
care,” “end-of-life choices,” “life-sustaining treat-
ments,” and “emotional states.” Nine studies exam-
ined death anxiety or mental health problems
among terminally ill patients or community-dwelling
older adults. The findings indicated that cancer pa-
tients had either very high or very low death anxiety
levels (Ho & Shiu, 1995). A high level of death anxi-
ety was associated with younger age (Wu et al.,
2002). Patients who did not have a clear awareness
of their prognosis were more likely to experience anx-
iety and difficulty communicating with family mem-
bers (Chan, 2011). Depressive symptoms were
evident among 43.9% of the patients. Up to 46.3%
reported the presence of suicidality (Cheng et al.,
2014a). Some patients might be situated in a “sup-
port paradox,” in which they desire family support
but also worry about care burden on family members
(Chan et al., 2009). Some 12 studies examined the
QoL of patients with terminal illnesses in different
settings. Overall, the results indicated substantially
impaired quality of life among terminally ill patients,
with two domains (physical symptoms and existen-
tial distress) scoring particularly low (Yan & Cheng,
2006). Four additional studies focused on validation
of QoL or psychological well-being scales.
Nine studies examined the preference for advance
directives (ADs) or advance care planning (ACP)
among institutionalized and noninstitutionalized
older persons and medical students. The findings
suggested that 96% of nursing home residents (Chu
et al., 2011a) and 81% of elderly inpatients with
chronic disease (Ting & Mok, 2011) had not previous-
ly heard of the term “advance directive.” However,
87.9% of nursing home residents preferred to have
Table 1. Research methods applied in the included
studies
Study Design Number of Studies

Qualitative study 30
Quantitative study 77*
Cross-sectional survey 31
Longitudinal survey 6
Prospective study 5
Clinical data mining 5
Retrospective study 19
or clinical data analysis
Single-arm trial 6
Controlled clinical trial 4

Fig. 3. Number of studies led by different care professionals. *Including five studies with mixed-methods design.

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 End-of-life care research in Hong Kong
Table 2. Participants in the included studies
Participants
Cancer patients
Noncancer patients with
chronic illnesses
Patients with end-stage renal
disease
Patients with dementia
Patients with chronic obstructive
pulmonary disease
Patients with acute myeloid leukemia
Nursing home or long-term
care residents
Deceased individuals
Community older adults
Care professionals
Family caregivers
*Including three studies on both cancer and noncancer
patients.
ADs regarding future medical treatment (Chu et al.,
2011a; 2011b), and 78% of community-dwelling older
persons with multiple medical problems accepted
ACP (Tsang et al., 2013). About half (49%) of elderly
inpatients with chronic disease said they would con-
sider using an AD if it was legalized in Hong Kong
(Ting & Mok, 2011). Among patients with advanced
malignancy who were newly referred to the hospice
service (Wong et al., 2012), 63% had ADs, while
37% did not. The vast majority of medical students
(90%) felt that their knowledge of ADs was inade-
quate, and 90% of students felt unprepared to deal
with ADs and EoL issues (Siu et al., 2010).
Table 3. Research themes that emerged from the
included studies
Outcomes or research themes
Physical symptoms or functional
problems
Attitudes to or perceptions of death
and dying
Utilization of healthcare services
Quality of life
Death anxiety or mental health
problems
Advance directives or ethical issues
Supportive care needs
Decision making
Spirituality
Cost-effectiveness and utility studies
Care staff and students’ knowledge,
beliefs, and experiences
Informal caregivers’ perceptions and
experience
Scale validation or development
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1715
A total of 14 studies examined healthcare staff
and students’ knowledge, beliefs, and experiences.
Number of The research themes merged in the field included a
Studies problem-based learning approach for nurse students,
42* the experiences of nurses caring for dying patients,
5* nurse –patient relationships, medical students’ atti-
tudes toward EoL decisions, knowledge and attitudes
7 of all ranks of old age home staff (nurses, physiother-
2 apists, occupational therapists, and social workers),
1 beliefs about death and dying or EoL care preferences
among social work students, and the emotional com-
1 petence of social workers. Seven studies examined
14 the experience or perceptions of family caregivers of
7 patients with a terminal illness. Other research
5 themes included supportive care needs, decision
17 making, spirituality, and cost-effectiveness (Table 3).
9
DISCUSSION
Our systematic review was the first to summarize EoL
care research conducted within an Eastern cultural
context. The results of this review will add additional
information to the findings of a recent pan-European
survey across 41 countries (Sigurdardottir et al.,
2010) and a systematic review of palliative care re-
search in Ireland, where the quality of death ranks
fourth globally (McIlfatrick & Murphy, 2013).
In our review, a diverse range of research activities
relevant to EoL care were identified. These research
activities were undertaken at different locations, us-
ing a range of methods, for varied subjects, with a
wide range of outcome measures. This diversity is in-
dicative of the different disciplines involved in EoL
care research. Such diversity could be considered as
a strength rather than a weakness (McIlfatrick &
Murphy, 2013). With a mixture of findings and per-
spectives from different disciplines, evidence-based
policy making might be better informed, evidence-
Number of Studies based guidelines to inform clinical practice could be
18
developed, and healthcare services and social re-
sources could be mobilized.
14
EoL Care Research in Hospital Settings
13
12 Our review indicated that palliative care services
9 played an important role in improving EoL care in
9 Hong Kong and had been successful in maintaining
2 patients’ QoL during the process of dying since the de-
2 velopment of the local hospice service in 1987 (Tse
2 et al., 2007; Lo et al., 2002). Seven strategies were im-
2 plemented between 2004 and 2009 to optimize the use
14
of inpatient beds due to the increasing need for palli-
7 ative care services (Lam et al., 2011). An integrated
EoL care pathway modified from the Liverpool Care
4 Pathway for the Dying Patient was implemented in
Hong Kong in 2007. It improved the quality of care
 1716
in both palliative care units (Lo et al., 2009) and acute-
care hospital settings (Siu et al., 2011). A collaborative
model of care was established in 2011 between the
acute geriatrics unit and the palliative medical unit
in response to the growing palliative care needs
among older adults (Cheng et al., 2014b).
According to a study conducted in 2010, palliative
care services covered 79.2% of cancer patients but
only 1.4% of noncancer patients in Hong Kong (Lau
et al., 2010). Compared to some other countries, pal-
liative care for noncancer patients lags far behind in
Hong Kong (Lau et al., 2010). In the United States,
63.1% of hospice admissions in 2012 were noncancer
patients (National Hospice and Palliative Care Orga-
nization, 2013). In the United Kingdom, noncancer
diagnoses accounted for 11% of all hospice admis-
sions in 2011 – 2012 (National Council for Palliative
Care, 2013). There seems to be a pressing need to de-
velop palliative care services for terminally ill non-
cancer patients in Hong Kong. Given the greater
prevalence of chronic terminal illnesses with extend-
ed dying trajectories, such measures could economize
the use of healthcare resources. Though there are
some practical barriers to implementing palliative
care for patients with noncancer terminal illnesses,
it may be possible to improve the quality of EoL
care for these patients by means of staff education
and training, formulation of practical guidelines, es-
tablishment of care pathways, and systemic changes,
without expenditure of additional resources (Woo
et al., 2011a; 2011b). None of the included studies fo-
cused on EoL care for children, younger adults, or
persons with intellectual disabilities or psychiatric
illnesses. Further studies on specific groups of people
with life-limiting illnesses are certainly warranted.
In Hong Kong, nearly all older adults with termi-
nal diseases received EoL care in hospital settings,
and most of them died at the hospital (Chu et al.,
2011b). This situation may be unique. According to
a systematic review, the proportions of dying and
deaths occurring at hospitals in other countries
range from 11% in Albania to 78% in Japan (Broad
et al., 2013). Given the high cost of medical care
and the increased burden induced by the aging pop-
ulation, the hospital-inclined model of EoL care
may not be sustainable. Perhaps it will be necessary
for the government of Hong Kong to make an effort to
reduce the proportion of hospital deaths.
EoL Care Research in the Community
In traditional Chinese society, death is a taboo subject.
It is believed that talking about death in daily life,
mentioning it in conversation, and sharing fears of
death may bring bad luck (Xu, 2007; Hsu, 2009).
Even for those who are dying, discussions about death
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Wang & Chan
are often avoided because of the fear that such discus-
sions could hasten the pace of dying or cause death
prematurely (Xu, 2007). It goes without saying that
this taboo may be a barrier to delivering EoL care in
the community. Consequently, many of the included
studies conducted in the community focus on the atti-
tudes to or perceptions about death and dying. The
findings of these studies may be essential to finding
the best way to change people’s attitudes and beliefs
and improve the quality of dying and death.
Unlike other countries, where the proportions of
death and dying occurring at home range from 17%
in Japan to 89% in Albania (Broad et al., 2013), few
natural and expected deaths occur at home in Hong
Kong. There are various potential barriers to individ-
uals dying at home here, including the crowded living
environment, the perceived threat to real estate val-
ues if death occurs at home, and social and cultural
taboos (Luk et al., 2011), not to mention legal encum-
brances (Tong, 2014). Accordingly, studies on deliver-
ing EoL care in the home setting and relevant
supportive care programs are very limited in Hong
Kong. In 2000, Wong and colleagues (2004) launched
a home care program from a hospital palliative care
unit. Some 32 dying patients were recruited who
were receiving home care and were followed until
death. Their physical symptoms were generally well
controlled, while the psychological aspects caused
the most concern for patients, families, and health-
care professionals. The mean number of home visits
was 6.1, with a range of 1–21 and a mean time spent
on each patient of 9.9 hours (range 2–38). However,
few such programs or similar studies have been re-
ported since then. In recent years, some palliative
home visits and palliative day care services have
been provided by the Hospital Authority of Hong
Kong. The conditions under which these services
were provided and the problems for which the home
visits and day care services were offered remain
poorly understood, though. It is also unclear whether
these services met the EoL care needs or demands in
the home settings. More study of these aspects is
definitely required.
EoL Care Research in Residential Care
Settings
Currently, about 7% of the older population in Hong
Kong is cared for in residential care homes (Census
and Statistics Department, 2009). These patients
tend to be frail, with multiple comorbidities, depen-
dent, and cognitively impaired (Woo & Chau, 2009).
However, 33.5% of all deaths are care home residents
(Hospital Authority of Hong Kong, 2013). Unlike oth-
er countries, the laws of Hong Kong have made dying
at home the exception rather than the rule, and care
 End-of-life care research in Hong Kong
home residents usually die in hospital (Tong, 2014).
As a result, as death approaches or one’s physical
condition becomes unstable, the resident undergoes
frequent transitions between hospital and care facil-
ity (Lee et al., 2013). The residents are usually trans-
ferred to emergency rooms and then acute medical
wards, followed by transfer to an extended-care
unit if indicated. A new model has been introduced
recently, where older nursing home residents are
transferred to an extended-care unit either directly
through liaison with the Community Geriatrics Out-
reach Service (pathway A) or from the emergency
room (pathway B) according to their advance care
plans. The evidence indicates that 39% could be ad-
mitted to the extended-care unit through the new
pathways, with their survival and quality of care un-
compromised and intact (Hui et al., 2014).
In Hong Kong, about 35% of respondents prefer
EoL care or to die in their care homes (Chu et al.,
2011a; 2011b; 2014). EoL care service in the care
home setting was begun in Hong Kong in 2000
(Chu et al., 2013). The average length of stay in hos-
pital during the last 30 days of life was only 1.3 days
for residents receiving EoL care, compared to an av-
erage of 16 days for residents not receiving EoL
care (Chu et al., 2013). Unfortunately, EoL care ser-
vices have not yet been generalized among care
homes in Hong Kong. Well-known barriers to good
EoL care in the care home setting include inadequate
staffing; a lack of supervision; inadequate knowledge
regarding EoL care issues among staff, residents,
and family members; and interference caused by
the personal attitudes and beliefs of staff members
about death and dying (Lee et al., 2013; Lo et al.,
2010; Mak et al., 2013). Both the availability of a doc-
tor and the attitudes of nursing home staff members
are also important factors (Chu et al., 2014). To date,
intervention or education programs to overcome
these barriers are still limited. More relevant studies
are warranted. Appropriate health policy to promote
implementation of community EoL care among elder-
ly people living in subsidized old age homes are also
needed. A local study suggested that the early (28
days) unplanned readmission rate to acute medical
units of public hospitals among institutionalized
older people is twice (36 vs. 18%) that of those living
in the community (Hui et al., 2014). Developing EoL
care programs in care home settings could lead to a
large reduction in unplanned hospital readmissions
and lowered hospital care costs (Chu et al., 2011b).
ADs and ACP
Most EoL care preferences can be indicated in ad-
vance in the form of ADs or ACP. ADs and ACP are
two different but overlapping concepts. “Advance di-
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1717
rective” is a term generally used in medical settings
to refer to decision making on such life-sustaining
therapies as cardiopulmonary resuscitation, artifi-
cial ventilation, oral or intravenous antibiotics, and
artificial fluids or nutrition. “Advance care planning”
is a concept that allows individuals to choose whether
or not to be hospitalized (Silveira et al., 2014). Ac-
cording to ACP, individuals can decide how they are
to be cared for, where they are to be cared for, and
where they will die. Of the nine relevant studies
examined in our review, most focused on ADs. A
form of ACP was recently introduced in Hong Kong
where the patient is given a choice of whether or
not to be transferred to an acute-care hospital in
case of deterioration while residing in a care facility
(Hui et al., 2014).
A law regulating ADs has been available for more
than two decades in such countries as Australia,
Canada, the United Kingdom, the United States,
and Singapore (Chu et al., 2011a; 2011b; Ting &
Mok, 2011). However, there is no case law on the va-
lidity of an AD in Hong Kong (Chu et al., 2011a). Con-
sequently, relevant studies conducted in Hong Kong
focus only on knowledge, attitudes, and preference
for ADs or ACP. In the United States, the proportion
of decedents with an AD has increased from 47% in
2000 to 72% in 2010 (Silveira et al., 2014). However,
awareness of ADs or ACP is still poor among the el-
derly population of Hong Kong, as demonstrated in
our review. More programs and research on promo-
tion and implementation of the concepts of ADs and
ACP in different patient groups and for different
end-stage illnesses are surely necessary. Apart from
studying the uptake and associated contributory fac-
tors for ADs, the effectiveness of AD implementation
strategies and their impact on hospitalizations and
medical expenditure should be investigated (see
Chu, 2012). Because of the uncertainty with ADs,
many patients and older adults are uncertain about
their end-of life care preferences and prefer their
physician to be their surrogate (Chan & Pan, 2007),
which places a great burden on physicians. There is
a need to reconsider AD legislation to facilitate im-
plementation of the practice among older adults or
patients with a terminal illness in Hong Kong. This
would constitute a major step toward improving
and promoting the quality and dignity of death and
dying.
Family Caregivers and Care Staff
The evidence indicated that 95% of informal caregiv-
ers in Hong Kong perceive difficulties in rendering
care for terminally ill patients (Loke et al., 2003),
and the younger the caregiver, the more difficulty
he or she may experience (Chan & Chang, 2000).
 1718
Although traditional filial beliefs provide motivation
for family caregiving, the regrets that come with un-
fulfilled filial responsibilities may create emotional
distress among adult Chinese caregivers (Chan
et al., 2012). The evidence also indicated insufficient
knowledge and skills necessary for palliative care
among some care staff and relevant students. Thus,
more supportive programs for family caregivers and
educational programs for relevant care staff, espe-
cially those working in care homes, are certainly
required.
Methodological Issues for the Included
Studies
Among the included studies, some methodological
issues were identified. First, most of the included
studies were descriptive. Of the limited number of
intervention-oriented studies, many were conducted
without a control group. The number of randomized
controlled trials was particularly limited (only two).
Second, there was a wide variation in sample size
among the included studies, and few of them justi-
fied the small sample size. Small samples most like-
ly are not representative, and the results obtained
are often biased. Third, there was a significant dif-
ference in care delivery related to the nature of
the samples in studies conducted in different set-
tings by different professionals. Unlike the overem-
phasis on needs-based palliative care research in
Ireland (McIlfatrick & Murphy, 2013), the number
of needs-based EoL care studies (especially in pri-
mary care settings) seems to be insufficient in
Hong Kong. Studies on the economic aspects are
also limited. Finally, numerous outcomes were as-
sessed with a range of measures. This is a strength
for the research agenda as a whole but a limitation
for psychosocial and mental health studies. Some
psychometric outcome measures may not be cultur-
ally sensitive, as they were developed in a Western
cultural context. Thus, interpretation of the results
of particular studies should be undertaken cau-
tiously. Recognized standard, valid, culturally appli-
cable, and reliable measures are required for
further studies.
LIMITATIONS OF THIS REVIEW
In our systematic review, study quality was not
ranked for the included studies due to the heteroge-
neity of research designs. We regarded the quality
of all included studies, however, as acceptable since
they were published after going through the peer-
review process. A major limitation of our review
may be that the keywords we employed to select pub-
lications may not have captured all the studies that
https://doi.org/10.1017/S1478951515000802 Published online by Cambridge University Press
Wang & Chan
used different terminology in their titles and abstracts
but were in fact relevant. Another limitation of our
review may be that exclusion of non-peer-reviewed
publications may have resulted in over- or underrepre-
sentation of certain themes. Such limitations are also
notable in other reviews (McIlfatrick & Murphy,
2013).
CONCLUSIONS AND RECOMMENDATIONS
Our review not only demonstrated a wide and di-
verse range of research activities related to EoL
care, but it also indicated that EoL care services
at primary care settings are underdeveloped in
Hong Kong. As reported by the Economist Intelli-
gence Unit (2010), the quality of EoL care in Hong
Kong is quite good, but the scores on three other in-
dicators (basic EoL care environment, availability of
EoL care, and cost of EoL care) of the Quality of
Death Index were much lower. With a growing el-
derly population, an increase in the prevalence of
chronic illness, and increased medical expenditures,
the care burden on our healthcare system is increas-
ing rapidly. There is a pressing need to move from a
hospital-inclined model to a community-shared
model of care so as to design an integrated EoL
care system involving hospitals, the long-term care
sector, and families. Although EoL care services in
primary care settings are also underdeveloped in
European countries (Murray et al., 2015) and in oth-
er regions, the challenges may be significantly
greater in Hong Kong because of its lack of infra-
structure and the cultural barriers. The increased
need for EoL palliative care will result in a greater
need for research in this area.
On the basis of evidence summarized in the pre-
sent review, several research priorities specific to
EoL care in Hong Kong are recommended. First,
there is a need to initiate studies to establish models
and components of EoL care in the community in
order to improve service delivery and optimize the
quality of life and quality of death for terminally ill
patients. Second, there is a need for studies to explore
the best strategies for collaboration between the med-
ical and social care sectors. Third, more vigorously
designed evaluation studies or interventional pro-
grams are needed in order to provide reliable scien-
tific evidence. In addition, studies on the economics
of EoL care are also warranted, as the importance
of the economic aspects of EoL care research cannot
be underestimated. This is of great significance with-
in the context of rising healthcare costs. Finally, fu-
ture studies could extend palliative care services to
the earlier stages of terminal illness and for a wider
range of conditions.
 End-of-life care research in Hong Kong
CONFLICTS OF INTERESTS
The authors hereby state that they have no conflicts
of interest to declare.
ACKNOWLEDGMENTS
No funding was received for our study. The authors would
like to thank Dr. Rainbow Ho and Dr. Christine Fang
for their support and to acknowledge the assistance of
Ms. Yee-Wa Hong for searching the electronic databases.
REFERENCES
Broad, J.B., Gott, M., Kim, H., et al. (2013). Where do peo-
ple die? An international comparison of the percentage
of deaths occurring in hospital and residential aged
care settings in 45 populations, using published and
available statistics. International Journal of Public
Health, 58, 257 –267.
Carlson, J. (2010). Not finished yet: Coalition wants end-of-
life care to be a priority. Modern Healthcare, 40, 17.
Census and Statistics Department (2014). Hong Kong
monthly digest of statistics. Hong Kong: The Govern-
ment of the Hong Kong Special Administrative Region.
Census and Statistics Department (2009). Thematic house-
hold survey. Report No. 40. Hong Kong: The Govern-
ment of the Hong Kong Special Administrative Region.
Chan, C.L., Ho, A.H., Leung, P.P., et al. (2012). The bless-
ings and the curses of filial piety on dignity at the end
of life: Lived experience of Hong Kong Chinese adult
children caregivers. Journal of Ethnic and Cultural
Diversity in Social Work, 21, 277– 296.
Chan, C.W. & Chang, A.M. (2000). Experience of palliative
home care according to caregivers’ and patients’ ages in
Hong Kong Chinese people. Oncology Nursing Forum,
27, 1601– 1605.
Chan, H.Y. & Pang, S.M. (2007). Quality-of-life concerns
and end-of-life care preferences of aged persons in
long-term care facilities. Journal of Clinical Nursing,
16, 2158– 2166.
Chan, W.C. (2011). Being aware of the prognosis: How does
it relate to palliative care patients’ anxiety and commu-
nication difficulty with family members in the Hong
Kong Chinese context? Journal of Palliative Medicine,
14, 997 –1003.
Chan, W.C., Epstein, I., Reese, D., et al. (2009). Family
predictors of psychosocial outcomes among Hong Kong
Chinese cancer patients in palliative care: Living and
dying with the “support paradox.” Social Work in Health
Care, 48, 519 –532.
Cheng, H.W.B., Chan, K.Y., Sham, M.K.M., et al. (2014a).
Symptom burden, depression, and suicidality in Chinese
elderly patients suffering from advanced cancer. Journal
of Palliative Medicine, 17, 10.
Cheng, H.W., Li, C.W., Chan, K.Y., et al. (2014b). Bringing
palliative care into geriatrics in a Chinese culture
society: Results of a collaborative model between pallia-
tive medicine and geriatrics unit in Hong Kong. Journal
of the American Geriatrics Society, 62, 779– 781.
Cheng, S.T., Lum, T., Lam, L.C., et al. (2013). Hong Kong:
Embracing a fast aging society with limited welfare.
The Gerontologist, 53, 527 –533.
Chu, L. (2012). One step forward for advance directives in
Hong Kong. Hong Kong Medical Journal, 18, 176.
https://doi.org/10.1017/S1478951515000802 Published online by Cambridge University Press
1719
Chu, L.W., Luk, J.K., Hui, E., et al. (2011a). Advance direc-
tive and end-of-life care preferences among Chinese
nursing home residents in Hong Kong. Journal of the
American Medical Directors Association, 12, 143– 152.
Chu, L.W., McGhee, S.M., Luk, J.K., et al. (2011b). Advance
directives and preference of old age home residents for
community model of end-of-life care in Hong Kong.
Hong Kong Medical Journal, 17(Suppl. 3), 13–15.
Chu, L.W., So, J.C., Wong, L.C., et al. (2014). Community
end-of-life care among Chinese older adults living in
nursing homes. Geriatrics & Gerontology International,
14(2), 273 – 284.
Chu, W.W. & Christine, Y. (2013). Evaluation of end-of-life
care service in a nursing home in Hong Kong, 2000–
2013: The clinical profile and hospital utilization. Asia
Pacific Regional Conference on End-of-Life and Pallia-
tive Care in Long-Term Care Settings.
Department of Health (2008). End-of-life care strategy:
Promoting high-quality care for all adults at the end of
life. London: Department of Health.
Department of Health and Ageing (2011). Supporting Aus-
tralians to live well at the end of life: National Palliative
Care Strategy 2010. Canberra: Department of Health
and Ageing.
Economist Intelligence Unit (2010). The quality of death:
Ranking end-of-life care across the world. Singapore:
Lien Foundation.
Giovanni, L.A. (2012). End-of-life care in the United States:
Current reality and future promise: A policy review.
Nursing Economics, 30, 127 –135.
Ho, S.M.Y. & Shiu, W.C.T. (1995). Death anxiety and coping
mechanism of Chinese cancer patients. Omega, 31,
59–65.
Hsu, C.-Y., O’Connor, M., & Lee, S. (2009). Understanding
of death and dying for people of Chinese origin. Death
Studies, 33, 153 –174.
Hui, E., Ma, H.M., Tang, W.H., et al. (2014). A new model
for end-of-life care in nursing homes. Journal of the
American Medical Directors Association, 15, 287– 289.
Lau, K.S., Tse, D.M., Tsan Chen, T.W., et al. (2010). Com-
paring noncancer and cancer deaths in Hong Kong: A
retrospective review. Journal of Pain and Symptom
Management, 40, 704– 714.
Lam, P.T., Ma, S.Y., Ng, H.Y., et al. (2011). Service outcomes
six years after implementing strategies in optimizing
bed utilization at a palliative care unit. Progress in Pal-
liative Care, 19, 109 –113.
Lee, J., Cheng, J., Au, K.-M., et al. (2013). Improving the
quality of end-of-life care in long-term care institutions.
Journal of Palliative Medicine, 16, 1268– 1274.
Lo, R.S., Woo, J., Zhoc, K.C., et al. (2002). Quality of life
of palliative care patients in the last two weeks of
life. Journal of Pain and Symptom Management, 24,
388 –397.
Lo, R.S., Kwan, B.H., Lau, K.P., et al. (2010). The needs,
current knowledge, and attitudes of care staff toward
the implementation of palliative care in old age homes.
The American Journal of Hospice & Palliative Care,
27, 266 –271.
Lo, S.H., Chan, C.Y., Chan, C.H., et al. (2009). The imple-
mentation of an end-of-life integrated care pathway in
a Chinese population. International Journal of Pallia-
tive Nursing, 15, 384– 388.
Loke, A.Y., Liu, C.F. & Szeto, Y. (2003). The difficulties
faced by informal caregivers of patients with terminal
cancer in Hong Kong and the available social support.
Cancer Nursing, 26, 276– 283.
 1720
Luk, J.K.H., Liu, A., Beh, P. & Chan, F.H.W. (2011). End-of-
life care in Hong Kong. Asian Journal of Gerontology &
Geriatrics, 6, 103 –106.
Mak, Y.W., Chiang, V.C. & Chui, W.T. (2013). Experiences
and perceptions of nurses caring for dying patients
and families in the acute medical admission setting. In-
ternational Journal of Palliative Nursing, 19, 423–431.
McIlfatrick, S.J. & Murphy, T. (2013). Palliative care
research on the island of Ireland over the last decade:
A systematic review and thematic analysis of peer-
reviewed publications. BMC Palliative Care, 12, 33.
Murray, S.A., Firth, A., Schneider, N., et al. (2015). Promot-
ing palliative care in the community: Production of the
primary palliative care toolkit by the European Associa-
tion of Palliative Care Taskforce in primary palliative
care. Palliative Medicine, 29, 101 –111.
National Council for Palliative Care (2013). National sur-
vey of patient activity data for specialist palliative care
services: MDS full report for the year 2011– 2012. Avail-
able from http://www.endoflifecare-intelligence.org.
uk/resources/publications/patient_activity_data.
National Hospice and Palliative Care Organization (2013).
NHPCO facts and figures: Hospice care in America. Avail-
able from http://www.nhpco.org/sites/default/files/pub
lic/Statistics_Research/2013_Facts_Figures.pdf.
Hospital Authority of Hong Kong (2013). Hospital authority
statistical report 2011–2012. Available from http://www.
ha.org.hk/upload/publication_15/471.pdf.
Sigurdardottir, K.R., Haugen, D.F., van der Rijt, C.C., et al.
(2010). Clinical priorities, barriers and solutions in
end-of-life cancer care research across Europe: Report
from a workshop. European Journal of Cancer, 46,
1815– 1822.
Silveira, M.J., Wiitala, W. & Piette, J. (2014). Advance di-
rective completion by elderly Americans: A decade of
change. Journal of the American Geriatrics Society, 62,
706 –710.
Siu, M.W., Cheung, T.Y., Chiu, M.M., et al. (2010). The pre-
paredness of Hong Kong medical students towards ad-
vance directives and end-of-life issues. East Asian
Archives of Psychiatry, 20(4), 155 –162.
Siu, S.W., Liu, R.K., Cheung, K.W., et al. (2011). End-of-life
care for Chinese patients in an acute care ward setting:
Experience in an oncology ward and report on a pilot
project on the use of an integrated care pathway. Pallia-
tive Medicine, 25, 664 –665.
Social Work Department (2013). Overview of residential
care services for elders. Available from http://www.
swd.gov.hk/en/index/site_pubsvc/page_elderly/sub_
residentia/id_overviewon/.
Ting, F.H. & Mok, E. (2011). Advance directives and life-
sustaining treatment: Attitudes of Hong Kong Chinese
https://doi.org/10.1017/S1478951515000802 Published online by Cambridge University Press
Wang & Chan
elders with chronic. Hong Kong Medical Journal,
17(2), 105 –111.
Tong, K.-W. (2014). Good death through control over place of
death? A snapshot in Hong Kong. In Community care in
Hong Kong: Current practices. Research studies and
future directions. K.-W. Tong & K.N. Fong (eds.), pp.
169– 208. Hong Kong: City University of Hong Kong
Press.
Tsang, M., Yeung, K., Wong, K., et al. (2013). Cross-section-
al survey on advance care planning acceptance and end-
of-life care preferences among community-dwelling
elderly with complex medical problems and their carers.
BMJ Supportive & Palliative Care, 3, 258– 259.
Tse, D.M., Chan, K.S., Lam, W.M., et al. (2007). The impact
of palliative care on cancer deaths in Hong Kong: A
retrospective study of 494 cancer deaths. Palliative Med-
icine, 21, 425 –433.
Williams, A.M., Crooks, V.A., Whitfield, K., et al. (2010).
Tracking the evolution of hospice palliative care in
Canada: A comparative case study analysis of seven
provinces. BMC Health Services Research, 10, 147.
Wong, F.K., Liu, C.F., Szeto, Y., et al. (2004). Health
problems encountered by dying patients receiving
palliative home care until death. Cancer Nursing, 27,
244– 251.
Wong, S., Lo, S., Chan, C., et al. (2012). Is it feasible to dis-
cuss an advance directive with a Chinese patient with
advanced malignancy? A prospective cohort study.
Hong Kong Medical Journal, 18(3), 178– 185.
Woo, J. & Chau, P.P. (2009). Aging in Hong Kong: The insti-
tutional population. Journal of the American Medical
Directors Association, 10, 478– 485.
Woo, J., Cheng, J.O., Lee, J., et al. (2011a). Evaluation of
a continuous quality improvement initiative for end-of-
life care for older noncancer patients. Journal of the
American Medical Directors Association, 12(2), 105–113.
Woo, J., Lo, R., Cheng, J.O., et al. (2011b). Quality of end-of-
life care for non-cancer patients in a non-acute hospital.
Journal of Clinical Nursing, 20, 1834–1841.
World Health Organization (WHO) (2002). Innovative
care for chronic conditions: Building blocks for action.
Global report on noncommunicable diseases and mental
health. Geneva: WHO Press.
Wu, A.M., Tang, C.S. & Kwok, T.C. (2002). Death anxiety
among Chinese elderly people in Hong Kong. Journal
of Aging and Health, 14, 42–56.
Xu, Y. (2007). Death and dying in the Chinese Culture:
Implications for health care practice. Home Health
Care Management & Practice, 19, 412 –414.
Yan, S. & Cheng, K.F. (2006). Quality of life of patients with
terminal cancer receiving palliative home care. Journal
of Palliative Care, 22, 261– 266.