1408 Journal of Pain and Symptom Management Vol. 55 No.

5 May 2018

Special Series on Diversity

Culture and Palliative Care: Preferences,

Communication, Meaning, and Mutual Decision Making
Cindy L. Cain, PhD, Antonella Surbone, MD, PhD, FACP, Ronit Elk, PhD, and
Marjorie Kagawa-Singer, PhD, MA, MN, RN, FAAN
Department of Health Policy and Management (C.L.C.), University of California-Los Angeles, Los Angeles, California; Department of
Medicine (A.S.), Division of Haematology and Medical Oncology, New York University Medical School, New York, New York; College of
Nursing (R.E.), University of South Carolina, Columbia, South Carolina; Department of Community Health Sciences and Asian American
Studies Center (M.K.-S.), University of California-Los Angeles, Los Angeles, California

Abstract
Palliative care is gaining acceptance across the world. However, even when palliative care resources exist, both the delivery and distribution of
services too often are neither equitably nor acceptably provided to diverse population groups. The goal of this study was to illustrate tensions in
the delivery of palliative care for diverse patient populations to help clinicians to improve care for all. We begin by defining and differentiating
culture, race, and ethnicity, so that these termsdoften used interchangeablydare not conflated and are more effectively used in caring for
diverse populations. We then present examples from an integrative literature review of recent research on culture and palliative care to illustrate
both how and why varied responses to pain and suffering occur in different patterns, focusing on four areas of palliative care: the formation of
care preferences, communication patterns, different meanings of suffering, and decision-making processes about care. For each area, we provide
international and multiethnic examples of variations that emphasize the need for personalization of care and the avoidance of stereotyping
beliefs and practices without considering individual circumstances and life histories. We conclude with recommendations for improving
palliative care research and practice with cultural perspectives, emphasizing the need to work in partnerships with patients, their family
members, and communities to identify and negotiate culturally meaningful care, promote quality of life, and ensure the highest quality
palliative care for all, both domestically and internationally. J Pain Symptom Manage 2018;55:1408e1419. Ó 2018 American Academy
of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Key Words
Palliative care, culture, race and ethnicity, social determinants, preferences, communication, suffering, decision making

Introduction In this study, we define palliative care as begin-

ning at the time of diagnosis of a serious illness
Palliative care focuses on reducing emotional,
and continuing along the entire continuum of
mental, physical, social, and spiritual distress of indi-
care, to hospice and end-of-life care, and finally
viduals with serious illnesses and their family mem-
to family bereavement after death. 1e3 Although
bers, to promote their desired quality of life. At its
palliative care has been shown to improve quality
best, palliative care actively engages the patient and
of life and reduce costs for persons with serious
family to identify their own goals of care, assisting
illness,4,5 the literaturedprimarily conducted in
and negotiating with them to obtain resources neces-
North America and Western Europedclearly docu-
sary to achieve their identified goals. This professional
ments racial and ethnic differences in perception,
mindset enables patients and their families to recog-
use, and satisfaction with the current system of
nize their own power in charting the course through
palliative care.6,7
their challenges.

Address correspondence to: Cindy L. Cain, PhD, Department of Accepted for publication: January 12, 2018.
Health Policy and Management, University of California, Los
Angeles, 650 Charles E. Young Dr. S., Los Angeles, CA 90095,
USA. E-mail: clcain@ucla.edu

Ó 2018 American Academy of Hospice and Palliative Medicine. 0885-3924/$ - see front matter
Published by Elsevier Inc. All rights reserved. https://doi.org/10.1016/j.jpainsymman.2018.01.007
Vol. 55 No. 5 May 2018 Culture and Palliative Care
Studies conducted in the U.S. indicate that racial and
ethnic minorities are less likely than non-Hispanic
whites (NHWs) to have access to quality care, including
standard medical care, experimental medical care, and
palliative care,8e11 and thus suffer higher morbidity
and lower quality of life compared to NHWs.8,10 Expla-
nations of why racial and ethnic disparities exist, how-
ever, often attribute the ‘‘culture’’ of racial and ethnic
minorities as a source of differences, rather than inves-
tigating and testing more nuanced explanations. For
example, many studies conclude that culture shapes
preferences about care, which then result in persons
from different racial and ethnic groups selecting pal-
liative care at differential rates. While culture certainly
does shape preferences, this conclusion limits our
understanding in three major ways. First, this focus
inaccurately conflates culture, race, and ethnicity. We
define these terms in the following to show how com-
mon assumptions about culture, race, and ethnicity
ignore within racial and ethnic groups diversity and
underappreciate commonalities across groups. Second,
preferences are complex and stem from both cultural
and structural factors. Availability, accessibility, acc-
eptability, and knowledge about options also funda-
mentally influence preferences. Third, culture is
powerful in our lives, beyond influencing preferences.
Cultural meanings emanate within multiple social loca-
tions, based on social, historical, and political circum-
stances. Because of this, culture shapes every aspect of
how we see the worlddnot just in forming preferences.
We use examples from an integrative review of palliative
care literature to illustrate the strong influence of cul-
ture in four aspects of palliative care: preferences for
care, communication patterns, meanings of suffering,
and decision-making processes. We conclude this study
with recommendations to improve future research and
the delivery of palliative care across the world.
Definitions
As a first step to develop effective palliative care for
diverse population groups, nationally and interna-
tionally, we propose definitions that identify culture,
race, and ethnicity as distinct constructs and note
that each has powerful and different ramifications
for practitioners as well as patients and their families
(see Table 1).12e15 In the U.S., race is viewed as a bio-
logic differentiation of humans into four subgroups
and one ethnicity (as used in the U.S. Census and
OMB Directive 15).20 Yet, these biologic differences
still account for a very limited portion of human ge-
netic variance.16,17,21 Race is more strongly a social
construct based on the erroneous 18th-century
assumption that our species of Homo sapiens consisted
of distinct subspecies that were phenotypically differ-
entiated and could not co-reproduce.16 Notably, this
1409
also coevolved with the sociological belief of gra-
duated inferiority with black skin at the bottom of
developmental hierarchy and whites as the highest
form of human evolution and thus superior.22 Find-
ings in precision medicine indicate that some genetic
differences exist between groups and affect both the
expression of diseases and variants of disease and also
differentially affect the efficacy of various medications
on particular populations. Notably however, these dis-
tributions overlap between so-called racial groups.23
Such biologic variations in population groups could
more accurately be called demes or clines as terms
for geographically variant groups, such as population
clusters, which have similar adaptive physiologic re-
sponses and cultural practices due to ecologic niche
conditions that have resulted in advantage for many ge-
netic variations (e.g., resistance to malaria with hete-
rozygous combinations of genetic variants such as
sickle cell, some thalassemias, and G6-PD).
Significantly, the use of racial categories in the U.S. is
not a benign product of outdated biologic science.22 So-
ciologically, one’s presumed racial category has implica-
tions for life opportunities and health.11,24e26 Racism is
a consequence of racial categorization, which defines
Table 1
Definitions of Social Labels That Shape Experience of
Serious Illness
Definition
Race Based on the erroneous 18th-century
assumption that our species of
Homo sapiens consisted of distinct
subspecies that were phenotypically
distinct, indicating their genetically
distinct genotype. These groupings
differ by country as well.
Population group/Deme Geographically designated groups,
such as populations that have
similar adaptive physiologic
responses and cultural practices
due to ecologic niche conditions
that create advantage for genetic
polymorphisms.
Ethnicity One’s sense of identity as a member
of a cultural group within a power
structure of a multicultural society
and identified so by others within a
sociohistorical context of a
particular geopolitical setting.
Culture A dynamic framework that evolves
and adapts within an ecologic and
technical setting through historical,
political, and social forces. The
framework provides a structure that
positions its subgroup members in
juxtaposition. Each subgroup
creates a dynamic system of beliefs,
values, lifestyles, and opportunities
that provide its members a sense of
safety, identity, and meaning of and
for life within the social, biologic,
physical, and political niche.
Definitions adapted from existing scholarship on race and ethnicity within
health care.11e19
1410 Cain et al.
others in terms of in- and out-groups. Racism results in
the assertion of power, ego fulfillment, and status at the
expense of others based on skin color and phenotypic
characteristics.18 Ethnicity, as defined, differs from the
externally designated identifier of race but is often
used synonymously. Ethnicity is defined as one’s per-
sonal sense of identity as a member of a cultural group
within a power structure of a multicultural society and
identified so by others within a sociohistorical context
of a particular geopolitical setting.16,27,28
Culture is a dynamic, adaptive, ecologically based
multilevel and multidimensional system for a popu-
lation group that creates a social structure, which pro-
vides its members a set of beliefs, expectations, and
tangible means to achieve a sense of safety, identity,
and meaning of and for life.12,13,15 Culture is more
than a random collection of beliefs and values in-
terchangeable within the same framework as the
northern European-American dominant culture. The
elements of a cultural system must be analyzed as an
ecologic framework in which its members live and
refract their ability to ‘‘see’’ the world, attribute mean-
ing to their daily lives, and persevere in the face of fear
and suffering. Identification and testing of the most
salient cultural elements impacting the patient’s
response to chronic illness must be contextualized to
comprehend its complexity first and then seek individ-
ual variations salient to clinical care.
Through social stratification, particularly in multi-
cultural societies, the dominant culture differentially,
and usually negatively, affects life opportunities at
the group and individual levels in lower social strata.
Every cultural group develops and maintains a social
structure that defines and coordinates the numerous
roles and relationships of its members. Notably, every
individual is also a member of multiple subcultural
groups, such as by gender identity, sexual identity,
age, occupation, and affinity groups. The rules of so-
cial interaction and the complex power relations
among the different groups constitute an added
dimension of complexity to the context of the lives
of cultural and subcultural group members. Study of
subcultural responses to life-threatening circum-
stances and the design of quality palliative care must
also be studied in juxtaposition with the values of
the power structure of the dominant population
group, no matter where in the world we look.13,15
We can improve palliative care for all by not
conflating culture, race, and ethnicity; recognizing,
acknowledging, and understanding why significant
variations within groups as well as between groups
exist; and incorporating our understanding of such
differences to provide individualized palliative care.
We suggest a deeper and fuller understanding of cul-
ture that uses a socioecologic framework to explicitly
integrate salient contextual social factors would
Vol. 55 No. 5 May 2018
enable us to craft more effective and sustainable prac-
tice skills.15,19,29 In addition, these approaches would
likely build trust between patients and families from
varied backgrounds and the providers who care for
them. Existing inequities underlie mistrust many indi-
viduals from disenfranchised communities feel toward
mainstream institutions and its practitioners. The
sources of this mistrust must be explicitly acknowl-
edged, understood, and addressed before we can
move forward in improving palliative care for diverse
populations.7,30
Culture and Palliative Care
Stakes of quality of care are high for persons facing
serious illness and their family members. Cultural be-
liefs and practices are particularly salient within pa-
tient and family members’ experiences of suffering.
Yet, they are often poorly understood by clinicians,
especially when the clinicians’ backgrounds differ
from those of their patients.31 Lack of sufficient
knowledge about how patients’ cultural beliefs and
practices inform the meaning of the disease and its
salience for individual members may contribute to dis-
parities in palliative care across the care continuum.32
For example, hospicedconsidered the standard of
end-of-life palliative care in the U.S.ehas dispropor-
tionately been used by white, Northern European
descent groups.33 Although utilization of these ser-
vices by diverse groups is improving in some areas of
care for patients with serious illnesses, disparities still
exist.34 Overall, disparities in care mean that people
of color, of diverse sexual orientation and disabled,
are less likely to receive care that aligns with their wish-
es than dominant cultural whites,35 and they report
lower levels of satisfaction with end-of-life care.36
The provision of culturally informed and responsive
care may ultimately change how diverse groups see
end-of-life care options.37
Notably, in addition to providing palliative care for
patients and families that is sensitive, acceptable, and
effective for diverse populations, a focus on culture
is beneficial to health systems. For example, early,
high-quality palliative care has been shown to prevent
expensive, unwanted end-of-life interventions
later,38,39 simultaneously improving quality of life for
patients40e42 as well as their loved ones.43e45
As outlined previously, we will use examples from
our integrative review of palliative care literature to
illustrate how culture matters in the provision of
high-quality palliative care in four areas: 1) prefer-
ences for care, 2) communication patterns, 3) mean-
ings of suffering, and 4) decision-making processes.
These examples are meant to help clinicians to seek
out and understand nuances in how culture informs
research and practice.
Vol. 55 No. 5 May 2018 Culture and Palliative Care
Preferences for Care
Individuals’ preferences for care for serious illness
affect both processes and outcomes of care. Processes
include the use of analgesics, types of interventions
tried, degree of knowledge about condition desired,
and level of family involvement in care decisions. Out-
comes include goals of treatment; adherence to pre-
scribed protocol for treatment; degree of physical,
mental, and emotional compromise the patient and
family may be willing to accept; consideration of do-
not-resuscitate orders; other forms of advance care plan-
ning; and ultimately timing, process, and place of death.
Preferences are often credited with racial and
ethnic differences in end-of-life outcomes. Studies
with African Americans (AAs) and Latinos often
conclude that they prefer high-intensity treatment
measures at the end of life compared to whites. How-
ever, the ways preferences produce care decisions are
not monoculturally formulaic.46 For example, advance
directives are one way that individuals express their
preferences, but some studies have concluded that
AAs prefer informal end-of-life planning based on per-
sonal relationships with their community leaders and
clinicians to formal documentation of preferences in
advance directives.47 Studies conclude that this could
be related to distrust due to mistreatment; poor
communication with practitioners; historic patterns
of slavery, racism, and research abuses; and faith that
emphasizes giving control to a higher power, but tak-
ing personal responsibility for doing what is possible.
By looking beyond explanations that center on gener-
alizations about race, we can better understand the
complex social, historical, and political factors that in-
fluence preferences.
Preferences are also shaped by additional concerns,
such as economic conditions, insurance status, struc-
tural features of the neighborhood, and knowledge.31
Physical place structures the kinds of options that are
available, sometimes limiting how preferences tra-
nslate into care options. For example, a recent review
of the growth of palliative care across the U.S. showed
that large hospitals (with 300 or more beds) were
seven times more likely than smaller hospitals to
have palliative care available and that much of the
southern U.S. has very poor access.48 Availability of
the services is a clear indicator of whether diverse com-
munities even have access to such programs let alone
the acceptability of the program itself.
Lack of availability of palliative care services is a
problem across the world, with almost a third of all
countries lacking any palliative care services and
many facing shortages of pain medications.49 Many
countries within the African continent have little to
no access to palliative care. A recent study found
only 136 hospice and palliative care organizations
1411
operating in 15 of the 54 African countries, despite
high need. Furthermore, only 21 African countries
had any identified hospice or palliative care activity. 50
Moreover, research on the spiritual dimensions of
health and sickness in Africa, such as the ways in which
people find meaning in illness and end-of-life care, is
particularly lacking.50
Clinician and health system characteristics in the
U.S. also shape how preferences are elicited and ad-
dressed. For example, because of institutionalized
racial biases, even when AAs have their preferences re-
corded, they are less likely than whites to have their
preferences followed.51 In addition, AAs are more
likely to live in neighborhoods where pharmacies do
not stock opioids, which then affects the availability
of pain reliefdregardless of the preferences of the pa-
tients or their clinicians.52 This situation illustrates
structural relationships between health delivery and
community characteristics and resources, all of which
affect what options individuals may realistically have
despite their desires.
The lower rates of use of palliative care by nonwhite
racial and ethnic groups are frequently attributed to
preference differences across groups. However, our
integrative literature review shows that not all options
are equally available to all patients. The structural is-
sues that intersect with choices individuals are able
to make are notable. In addition, even when pre-
ferences can be identified as an independent cause
of disparities, we need a more nuanced account of
how culture shapes those preferencesdthrough
communication with clinicians, meanings of suffering,
and decision making. We discuss each of these in the
following.
Communication Patterns
Communication patterns affect how patients
interact with clinicians, such as preferred degree of
directness of communication about their condition,
level of family involvement, terms that are appropriate
or inappropriate, and nonverbal cues. One of the
clearly documented differences in communication
styles, or the nature of the communication, is in refer-
ence to patients’ desire to know the various details
about their disease. Some patients want to know as
much as possible about the disease process, trajectory,
and prognosis.53,54 These beliefs and practices are
codified in the expected professional health care prac-
tice of autonomy in decision making by the patient.55
Others believe that discussing death hastens the pro-
cess and do not wish to have direct communication
on these topics. For example, studies in North Am-
erica show that some Native American cultures have
taboos against talking about death, which can make
enrollment in end-of-life palliative care difficult.56
1412 Cain et al.
While making assumptions about level of information
to share may lead to stereotyping and erasure of indi-
vidual variations within these groups, clinicians can
attend to these differences in communication by
gently inquiring about how much one already knows
and how much they desire to know about their
condition.57
Within-group variations are also salient. In a study
of English- and Japanese-speaking older adults in the
U.S. and Japan, significant differences were found in
whether patients would want to know their diagnosis
and prognosis with words, without words, or not at
all. Statistically significant differences were found
among the three groups, indicating place, and likely
degree of westernization affected the responses within
the same ‘‘ethnic/racial’’ group, as well as the power
of nonverbal communication.58 In fact, Mehrabian
found that within emotionally laden conversations,
55% of communication is nonverbaldintentional
and unintentionaldand 38% is based on paralan-
guage (the tone, pace, and volume of speech); only
7% of communication was verbal.59 For example, Sur-
bone tells the story of a woman who misinterpreted
her physician’s black evening dress as a signal that
death was near.60 Although this message was not in-
tended, it shaped the patient’s experience and her
relationship with her physician thereafter, during her
final few weeks of life. In addition, recent studies
have confirmed that communication preferences
about serious illness become more westernized as
immigrant groups become more integrated.61,62
Thus, making assumptions about individuals based
solely on their ethnic origin is likely unfounded and
should be explored for accuracy.
Cross-cultural communication includes interactions
between members of different nations, as well as people
from the same nation but from different subcultural
backgrounds. The challenges in this form of commu-
nication for patients and families as well as clinicians
require all parties to clarify potential discordant un-
derstandings of the clinical situation. Discordance
may affect the understanding of the concerns and
needs of patients and families, at all stages of serious
illness, where the psychosocial, relational, and spiritual
dimensions of care are as important as the strictly med-
ical and technical ones. One study found that nonwhite
patients were more likely to have discordant beliefs
(from clinicians) than white patientsdand patients
with discordant beliefs, regardless of race, were almost
always more optimistic than clinicians.63 While findings
in this study focus on racial differences, it is likely that
cultural differences in communication and meanings
of illness are the drivers of this discordance.
Care for those who do not speak the same language
as the clinician poses unique challenges to comm-
unication. Even clinicians who have learned a foreign
Vol. 55 No. 5 May 2018
language as a second language should also go through
interpreter trainings to assure that they understand
the nuances and cultural norms and meanings of
how words are used in particular situations, including
body language and gender differences in language
use. Interpreters may be an integral part of the care
team and work with clinicians when patients and fam-
ilies deem it appropriate and acceptable according to
their cultural values and norms.64,65 Studies on the use
of interpreters have concluded that professionally
trained interpreters can be effective cultural media-
tors between patients, families, and the medical
team.66 Providing the opportunity and choice to
have a skilled interpreter to participate is extremely
valuable for all parties. In small, close-knit commu-
nities, additional care must be paid to the selection
and training of interpreters so that confidentiality is
maintained at all times.
Age, generation, gender identity, education, degree
of familiarity and integration with the dominant cul-
ture, and geographic region also shape communication.
Despite these differences, however, commonalities
across groups exist. For example, older adults often
have similar concerns and needs regardless of their cul-
tural backgrounds, and many delegate the processes of
information and decision making to their relatives or
doctors.67,68 Autonomy of older adults is often ques-
tioned by clinicians and families, who see the older
adult as fragile. This assumption often stems from cul-
tural attitudes of ageism, and consequently, autonomy
is compromised despite the individual’s desires.69
Because much of communication is tacit, these inter-
group and intragroup differences make supportive
and effective communication challenging. It is essential
to elicit expression of potential differences appropri-
ately and to build and maintain trust and effective col-
laborations between patients, family members, and the
clinical staff.
Meanings of Suffering
Experiences of physical and existential suffering are
given meaning through cultural understandings.70
Illness narratives emerge from cultural under-
standings but are reinforced, challenged, and repro-
duced through personal experiences. Meier tells the
story of a young woman with leukemia, who was in
immense pain, but because her brother had had a his-
tory of substance abuse, her parents were reluctant to
allow her to receive opioids.71 Beliefs about addiction
and disease made it difficult for the family members to
understand why opioids may be appropriate in this
situation.
For many people, from all backgrounds, their reli-
gion or cultural philosophy informs their worldview,
including their response to serious illness. Thus,
Vol. 55 No. 5 May 2018 Culture and Palliative Care
interpretations of physical and emotional pain are
filtered through both individual and cultural lenses
to create meaning and mediate the experience of
pain and suffering to provide a rationale for the per-
son’s circumstances.72 For example, for some black
Caribbeans with cancer, physical pain is considered
to be a test of faith and therefore should be endured
and not hidden with medication.73 However, it is
important to also acknowledge diversity within any cul-
tural and/or religious group. To illustrate, a study of
Christians in the southern U.S. found that residents
of different races and ethnicities were likely to use
their Christian beliefs to make sense of serious illness,
including the presences of miracles.74 In this case, the
geographic region indicated a larger cultural context
that affected the majority of its residents, although
studies often focus on racial differences in the role
of religion.
Timing, expressions of, and rituals for grief for fam-
ily members are also guided through cultural mores.
Patients’ quality of life is strongly linked to caregivers’
bereavement before and after death75 but how
involved family caregivers are in life and after death
also varies. One study describes that in Islamic cul-
tures, ‘‘total involvement of caregivers is natural, in
the context of long-held value of respect for uncondi-
tional solidarity’’ (2).67 Given this total involvement,
bereavement processes may be more extensive or ritu-
alized than for other groups. Religious beliefs are
important in this process, often providing essential
meaning to loss.76
We also have to understand meanings within larger
collective cultural histories. A study of Inuit families in
Quebec concluded that the group’s cultural history of
oppression under colonial policies was interwoven
into how individuals and families made sense of
bereavement.77 Similarly, within sub-Saharan Africa,
the concept of ‘‘ubunta’’ is seen as the essence of be-
ing human and speaks of interconnectedness.
Behavior is judged as ancestor worthy of respect or
veneration or not. Within the context of ubunta, rela-
tionships with other people are of central importance.
Thus, spiritual and social distress, if expected practices
are dampened or disrespected, is likely to have a
particularly detrimental effect on a patient’s quality
of life. These spiritual, communal aspects of death
are too often complicated by the stigma of particular
diseases, such as HIV. Individuals may hide diagnoses
from their fellow church members and clergydthus
dying in isolation from their social network.50
Cultures, however, as noted, are dynamic. Thus,
newer diseases, such as AIDS or Ebola virus, are rela-
tively new to every society, and traditional attitudes
and responses eventually accommodate and integrate
the new reality. However, this takes time, and under-
standing the juxtapositions of the current meaning
1413
of a disease has to be negotiated with patients and
communities over time.
These examples show that it is not just individual
history but also culture and its collective history that
affects how people make sense of the experience of
serious illness. Cultural meanings mediate the experi-
ences of suffering, which then affect how individuals
and family members approach decision making about
care. Palliative care must understand culture as a
source of meaning. In addition, the rituals that sur-
round this point in life also provide guidance, focus,
and stability as patients and families and their social
support network are faced with such wrenching tran-
sitions. As clinicians and health care institutions are
faced with the potential disruption of protocols within
their biomedical models, discussions and negotiations
with patients and family members are essential to
respect their wishes and still maintain safety, privacy
of others, and the ability of staff to function effectively
and efficiently. The balance, at the beginning, is chal-
lenging as patients, family, and staff create a new way
of being with often new diseases or circumstances.
Decision-Making Processes
Whether an individual expects to make decisions
autonomously or with input from family members
or clinicians is derived, in part, from grossly glossed
cultural orientations toward individualism or comm-
unalism as primary values of how individuals express
or suppress their autonomy. In fact, when adults are
not competent to make decisions for themselves,
U.S. laws concerning decision-making center on au-
tonomy as the most important principle. This focus
on autonomy is an artifact of cultural privileging of
the individual and is likely not appropriate for all
groups. In fact, one study of decision making after
a cancer diagnosis found that family involvement
was common but varied by race and ethnicity, as
measured by the researchers. Just under half of all
NHWs involved family members in decision making,
while rates were higher for Asian Americans and
Spanish-speaking Latinos.78
The authority given to clinicians also varies by cul-
ture. In a study of Japanese patients and their surro-
gate decision makers, surrogates preferred that
doctors make care decisions when individuals did
not express their wishes in advance.79 However, site
of decisional control is highly variable, and we must
be careful not to stereotype by race or ethnicity. For
example, one study split a sample of older adults by
degree of control desired and did not find that min-
ority racial status or cultural integration was associated
with decisional control.80 Cultural meanings inform
how people with serious illness think about involving
others in decision-making processes.
1414 Cain et al.
Differences in decision-making processes and pref-
erences translate into differences in the completion
of formal advance directives. For some, wishes about
end of life are communicated verbally, and individuals
do not wish to put them in writing. Therefore, some
individuals are reluctant to ‘‘sign’’ advance directives
and may seek relationships with their clinicians that
are based on caring and trust.7 These preferences
for communicating wishes may be shaped by one’s cul-
tural understandings of illness and their social history.
As noted in the earlier section, religious beliefs affect
decision making through the belief that a higher power
makes the ultimate decisions. Although there is great
diversity within any single racial group, multiple qualita-
tive studies have concluded that religious AAs are likely
to see God as an ultimate authority over health, illness,
and death; this also may mean seeing health care clini-
cians as God’s tools.81,82 This belief is integrally tied
into the history of racism in the U.S., which has
methodically challenged the right to life of AAs.30 Cul-
tural fortitude has been essential to overcoming unbe-
lievable odds. This history may not be foremost in
individuals’ minds, but the consequences are apparent.
Clinicians and researchers have to be cognizant and
respectful of the social and political histories of
different strata within diverse societies and prove
one’s trustworthiness in such a way that expresses sup-
port for the patient and family to discuss their wishes
with clinicians and find compromises for care that hon-
or the reality of all parties.
Decision-making processes are institutionalized
through laws and practices within health care settings.
Notably, in the U.S., these processes are based on pre-
serving the autonomy of the individual. Such an
approach may not reflect the ways individuals make
decisions in times of crisis.83 A full understanding of
the importance of family members, assumptions about
clinicians’ authority, approaches to communicating
wishes through writing, and outcomes controlled by
a higher power requires integration of knowledge
about the role of diverse cultural approaches to life
decision making.
Recommendations
Improving Research
We have used examples from our integrative lite-
rature review to illustrate tensions in the provision of
high-quality palliative care for diverse patient popu-
lations. These tensions have implications for both
research and practice. Our conceptualization of culture
as a distinct construct from race and ethnicity is ess-
ential to understand how and why individuals and their
families differ in their preferences, communication ori-
entations, meanings, and decisions13 and, ultimately,
how we define the criteria and process for ‘‘positive’’
Vol. 55 No. 5 May 2018
outcomes. We do not reject the use of race and
ethnicity in research but recommend that researchers
more carefully delineate and measure their use of these
terms: race, ethnicity, and culture.
Kagawa-Singer et al. make extensive recomme-
ndations on how to carry out culturally informed
research, including appropriately conceptualizing
and operationalizing culture.15 In addition, expl-
anations of racial and ethnic differences that credit
‘‘culture’’ should be examined to determine if there
are, in fact, different ‘‘geographic, historical, social,
and political realities’’ between the groups studied.15
Such efforts will avoid any stereotyping that often un-
derlies subtle biases and overt discrimination against
minority and underprivileged patients by individual
health care workers and/or institutions.84 In some
cases, persons from the same racial group have similar
cultures, but they likely range on a continuum. As
emphasized throughout this study, our goal was to
help clinicians and researchers better access a pa-
tient’s individual personhood within individual cul-
tural contexts. These are different, though
reciprocally shaped, for example, by processes of cul-
tural dissent or personal choice.13 Research is
improved through listening to the patient within their
own reality of culture that includes their social, his-
torical, and political contexts.
Improving Palliative Care Practice
Palliative care continues to grow across the globe,
with an emphasis on encouraging generalist palliative
care across the care continuum3,85 as well as promoting
specialist palliative care in community-based set-
tings.49,86 In both of these developments, we re-
commend steps to begin improving care in diverse
populations. First, clinicians should emphasize that
their role is not meant to replace family caregivers
but to supplement and potentially enhance existing
supports. This requires taking a more inclusive stance
by asking more questions about what patients believe
and desire.55 Clinicians should also be prepared and
skilled to have difficult conversations, not only about
death and loss but also about cultural histories of
mistrust, the importance of religion and spirituality in
patients’ lives, and their own lack of knowledge about
the variety and richness of different cultural beliefs
and practices.52,87 This requires moving away from con-
cepts related to cultural competency to emphasizing
humility and openness. Technical competency may
reproduce overgeneralizations about groups and
make it unlikely that clinicians will see individual differ-
ences within groups.88 Table 2 provides prompts help-
ful for communicating more openly and effectively
about culture.
Creating a more diverse workforce may better meet
the needs of diverse patients as well as help all
Vol. 55 No. 5 May 2018 Culture and Palliative Care 1415

clinicians to understand a range of perspectives.90 But
a diverse workforce must also be trained to see their
own perspective, or they will continue to assume their
cultural ways of viewing care as the single reality. Pro-
fessional training would benefit from interdisciplinary
approaches that include physicians, nurses, social
workers, chaplains, and all other team members,
including community representatives and family mem-
bers. Within these professionally and culturally diverse
trainings, clinicians would have more opportunity to
see their own biases and practice understanding
others’ views.64,91 Training should also emphasize
our commonalities, as a way to counteract stereotyping
and implicit bias and promote an interest in the uni-
versal needs of humans facing life-threatening
circumstances.92
Ultimately, clinicians will likely find that new,
expanded models of palliative care are necessary for
reaching different cultural groups. These models
may require realigning their messaging about pal-
liative care as well as becoming more flexible and
innovative in their overall approach. Some promising
options may include the use of more culturally conso-
nant patient liaisons or community health workers.93
Other options may be to use different tools to assess
needs. For example, Periyakoil used a card-sorting
technique to understand patients’ priorities and un-
derstandings about serious illness.94 This could be in-
tegrated into consultations as a way to start
conversations and identify individualized needs.
It is important to note that as palliative care ap-
proaches adapt to meet the needs of diverse groups,
individuals’ preferences and decision making
regarding palliative care will also likely change. To
support this change and ensure continued engage-
ment, local health care facilities could partner with

Table 2
Assess ABCDE to Ascertain Level of Cultural Influence
Relevant Information Questions and Strategies

Attitudes of patients and families What attitudes do this ethnic group in general,
and the patient and family in particular, have
toward truth telling about diagnosis and
prognosis?
Beliefs What are the patient’s and family’s religious and
spiritual beliefs, especially those relating to
the meaning of death, the afterlife, and the
possibility of miracles?
Context Questions about the historical and political
context of their lives, including place of birth,
refugee or immigration status, poverty,
experience with discrimination or lack of
access to care, languages spoken, and degree
of integration within their ethnic community.
Decision-making style What decision-making styles are held by the
group in general and by the patient and
family in particular?
Is the emphasis on the individual patient
making his or her own decisions or is the
approach family centered?
Environment What resources are available to aid the effort to
interpret the significance of cultural
dimensions of the case, including translators,
health care workers from the same
community or religious leaders, and family
members?
Adapted from work by Koenig and Gates-Williams.89 Reprinted from Kagawa-Singer and Blackhall.55
Educate yourself about attitudes common to the
ethnic groups most frequently seen in your
practice. Determine attitudes of your patient
and your patient’s family. For example, what is
the symbolic meaning of the particular
disease?
Acknowledge that spirituality and religion
sustain many people during times of distress.
Ask questions such as
‘‘What is important for us to know about your
faith or spiritual needs?’’
‘‘How can we support your needs and
practices?’’
Where do you find your strength to make sense
of this experience?’’
Religious and community organizations may be
able to provide general information about the
relevant group. Ascertain specific information
by asking the following:
‘‘Where were you born and raised?’’
‘‘When did you immigrate to [country], and
what has been your experience coming to a
new country?’’
‘‘How has your life changed?’’
‘‘What language would you feel most
comfortable speaking to discuss your health
concerns?’’
‘‘What were other important times in your life
and how might these experiences help us to
understand your situation?’’
Learn about the dominant ethnic groups in
your practice:
How are decisions made in this cultural group?
Who is the head of the household?
Does this family adhere to traditional and
cultural guidelines?
Identify religious and community organizations
associated with the ethnic groups common in
your practice (hospital social worker and
chaplains may be able to help you in this
effort).
1416 Cain et al.
communities to understand patients’ and family
members’ cultural views of life, death, and suffering,
to culturally base and adapt their clinical approaches
to be more inviting to their diverse populations. Cli-
nicians should be willing to engage with patients,
family members, and communities to integrate their
cultural understandings with the physical realities of
serious illness.
Conclusion
Understanding and respecting cultural diversity in
research and the practice of palliative care is essen-
tial for ensuring high-quality care for all with serious
illness. Although researchers and clinicians may
have a sense of efficiency and comfort with assumed
universal gold standards of human behaviors, the
basic premise of universality of responses to the
threat of illness and suffering has yet to be demon-
strated. Cultural variation shows that fundamental
human concepts such as the meaning of life, fair-
ness, suffering, and quality of life are quite variable.
At the end of life, recognition of the patient’s cul-
tural interpretations requires additional under-
standing and efforts on our part to accompany our
dying patients and their families with utmost
respect.
Although caring for people dealing with serious
illness is often extremely enriching for professionals,
it also poses practical difficulties and moral di-
lemmas for clinicians. It is impossible to be an expert
in all cultures, but clinicians can listen to the needs
of their patients and their family members who
may come from cultures different than their own,
to learn about their different attitudes, preferences,
and practices and integrate them into an appropriate
care plan.
Presently, attempts to collate cultural information
have resulted in approaches that treat culture in
superficial ways, leading to stereotyping and overgen-
eralizations.95 However, if health care professionals
attend to the recommendations in this article, they
will likely be motivated to learn as much as possible
about those cultural groups with which they work,
and consult community members and interfaith chap-
lains to enable them to integrate the patient’s per-
sonal and cultural perspectives into their therapeutic
plans. These efforts will enable clinicians to begin to
understand what it truly means to ‘‘go where s/he
lives’’55 in the provision of care, and patients and fam-
ilies from diverse backgrounds would receive better
quality care in the face of serious illnesses.
Disclosures and Acknowledgments
The authors have no conflicts of interest to report.
Vol. 55 No. 5 May 2018
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