Negotiating Cross-Cultural Issues at the End of Life
"You Got to Go Where He Lives"
JAMA. 2001;286:2993-3001
Author Information <http://jama.ama-assn.org/issues/v286n23/rfull/#aainfo>
Marjorie Kagawa-Singer, PhD, MN, RN; Leslie J. Blackhall, MD, MTS
Culture fundamentally shapes how individuals make meaning out of illness,
suffering, and dying. With increasing diversity in the United States,
encounters between patients and physicians of different backgrounds are
becoming more common. Thus the risk for cross-cultural misunderstandings
surrounding care at the end of life is also increasing. Studies have shown
cultural differences in attitudes toward truth telling, life-prolonging
technology, and decision-making styles at the end of life. Using 2 case
studies of patients, one of an African American couple in the southern
United States and the other of a Chinese-American family in Hawaii, we
outline some of the major issues involved in cross-cultural care and
indicate how the patient, family, and clinician can navigate among differing
cultural beliefs, values, and practices. Skilled use of cross-cultural
understanding and communication techniques increases the likelihood that
both the process and outcomes of care are satisfactory for all involved.
JAMA. 2001;286:2993-3001
JEL10001
THE PATIENTS' STORIES
Mr and Mrs G, an African American Couple
Mr G is a 66-year-old African American man diagnosed with stage IV squamous
cell cancer of the lung in October of 1999. He has chronic obstructive
pulmonary disease and has a 40 pack-year smoking history. A retired factory
worker, he lives at home with his wife in a large city in Alabama. After
diagnosis, he received radiation therapy and a trial of chemotherapy with
vinorelbine and cisplatin. In the fall of 2000, with evident progression of
the disease, his pain and dyspnea increased, adding to the symptom burden of
asthenia, anorexia, and delirium. On December 6, 2000, he was admitted to an
inpatient palliative care unit with symptomatic hypercalcemia. He was
treated with fluids and pamidronate, and approximately 1 week later was
discharged home with hospice services. He and his wife were interviewed on
December 7, 2000 by Dr C, Mr G's European American physician.
Ms Z, a Chinese American Woman
Ms Z is a 38-year-old Chinese American woman who, along with her older
sister, was the primary caretaker for both parents over extended illnesses.
She, her older sister, and both parents were born and raised in Hawaii. Her
college-educated mother was diagnosed with stage IIIB adenocarcinoma of the
lung in December 1994. In the 6 months following her diagnosis she underwent
6 rounds of chemotherapy, followed by radiation. Despite treatment, the
disease metastasized to the liver, brain, and bones. During a final 10-day
hospital stay she continued to undergo radiation treatment. Still
hospitalized while hospice was being considered, she died in January 1996 at
the age of 73 years. Ms Z's father was a prominent business executive and
community leader. He was diagnosed with Parkinson disease in the early 1990s
and was treated with Sinemet (levodopa and carbidopa) and other medications.
He died of complications from Parkinson disease in February 1997 at the age
of 78 years, following a brief admission for aspiration pneumonia.
Throughout her parents' illnesses Ms Z lived in California and commuted to
Hawaii every few months, where her parents, her 40-year-old sister, and
several relatives lived. Ms Z was interviewed by a Perspectives editor on
January 12, 2001.
PERSPECTIVES
In the interview between Mr G and his physician, Dr C, for this article, Mr
G suggested how physicians could improve their relationship with patients,
especially when the cultural background of the 2 are different.
MR G: Well, you know, you got to find out the identity of a person to even
get to know them. So I think that's a big "if" right there. Because if you
don't know a person, you got to find out his identity, go where he lives,
where he goes, where he was born, who's in his family. And he's got to open
up, and tell you these things. Because the more you know about this person,
his family, then that'll make you know more about you.
Ms Z related to the Perspectives editor her communication with her mother
after the doctor indicated to them that the prognosis for survival was poor.
MS Z: We never discussed it [my mother's prognosis] after [the doctor told
us] . . . My father never discussed his prognosis either . . . my father
knew he had Parkinson's. There was certainly [material] available for him to
read if he so chose. I don't think he read it. And there does seem to be a
barrier discussing it, especially about the course of treatment. I think
there are 2 issues: one is the actual discussion about death, and one is the
discussion about treatment and care up to that point. And both of my parents
were resistant to discuss either issue.
CULTURE AND MEDICAL CARE
The United States is home to an increasingly diverse population, where the
former dominant cultureEuropean American (white)is no longer a majority in
some places. Encounters between patients and physicians of dissimilar
ethnicities are becoming more common, yet the literature in end-of-life care
has only recently begun to investigate the influence of cultural differences
on the clinical encounter. The recent President's Race Initiative (1997) 1
<http://jama.ama-assn.org/issues/v286n23/rfull/#r1> to eliminate racial
disparities in health outcomes indicates that cultural differences
significantly affect the provision of healthcare, including at the end of
life. Without concerted attention to resolve cultural differences,
disparities are likely to increase. 2
<http://jama.ama-assn.org/issues/v286n23/rfull/#r2>
Culture is an important part of the context within which people (including
health care professionals) understand their world and make decisions about
how to act. Although each individual has a perspective that is influenced by
many factors such as personal psychology, gender, and life experiences,
culture fundamentally shapes the way people make meaning out of illness,
suffering, and dying, and therefore also influences how they make use of
medical services at the end of life. However, culture is not an independent,
homogeneous, dichotomous variable. 3
<http://jama.ama-assn.org/issues/v286n23/rfull/#r3> If "culture" is simply
reduced to a series of isolated acontextual beliefs or practices categorized
by ethnic origin, we run the risk of stereotyping or believing we know what
any one individual thinks or does because we assume we know what people of
that group tend to think. In fact, there is wide variation of beliefs and
behaviors within any ethnic population. The other extreme is to disregard
culture's fundamental function of giving meaning to life and of providing
guidelines for living. 4 <http://jama.ama-assn.org/issues/v286n23/rfull/#r4>
Failure to take culture seriously means we elevate our own values and fail
to understand the value systems held by those of different backgrounds. Dana
labels this posture "culturally destructive," as compared with "culturally
skilled," behavior. 5 <http://jama.ama-assn.org/issues/v286n23/rfull/#r5>
Assuming a Chinese woman would not want to be told her diagnosis because she
is Chinese is stereotyping. Insisting that she must be told, even at the
risk of violating her rights, is a form of cultural imperialism. The
challenge is to navigate between these poles.
Misperceptions caused by lack of cultural sensitivity and skills can lead to
unwanted or inappropriate clinical outcomes and poor interaction with
patients and their families at critical junctures as life comes to a close.
6 <http://jama.ama-assn.org/issues/v286n23/rfull/#r6> , 7
<http://jama.ama-assn.org/issues/v286n23/rfull/#r7> If the Chinese family
mentioned in the opening scenario believes that knowing the truth is harmful
to the patient, a physician who persists in telling them the direct "truth"
may be perceived as cruel, uncaring, and ignorant. The result is mistrust
and anger, and may even precipitate the removal of the patient from medical
care altogether. 8 <http://jama.ama-assn.org/issues/v286n23/rfull/#r8>
Patients bring to the medical encounter different languages, explanatory
models concerning the cause and treatment of illness, religious beliefs, and
ways of understanding the experience of suffering and dying. 2
<http://jama.ama-assn.org/issues/v286n23/rfull/#r2> Styles of communication
and beliefs about the role of physician, patient, and family also vary, and
such differences may occur against the backdrop of experiences of societal
oppression or inequities in medical care. 9
<http://jama.ama-assn.org/issues/v286n23/rfull/#r9> For this reason, the
clinical encounter often requires a negotiation between the worldviews or
cultures of the clinician and the patient and family to reach mutually
acceptable goals. 2 <http://jama.ama-assn.org/issues/v286n23/rfull/#r2> , 10
<http://jama.ama-assn.org/issues/v286n23/rfull/#r10> , 11
<http://jama.ama-assn.org/issues/v286n23/rfull/#r11> In the end, addressing
and respecting cultural differences will likely increase trust, leading to
better clinical outcomes and more satisfactory care for patients and their
families. 12 <http://jama.ama-assn.org/issues/v286n23/rfull/#r12>
Using 2 case studies as examples of cross-cultural encountersan African
American couple in the southern United States and a Chinese American family
in Hawaii and Californiawe examine 6 specific issues for end-of-life care
Table 1
<http://jama.ama-assn.org/issues/v286n23/fig_tab/jel10001_t1.html> ). These
families, from 2 different ethnic groups, share some views more aligned with
each other than with the dominant culture, such as the reluctance to accept
hospice and the dynamics of extended family involvement. The issues
presented, and the views of each of the interviewees, however, are by no
means exhaustive or generalizable to their entire ethnic group. Cultures are
not monolithic, and a range of potential responses to each issue is likely
to occur in every ethnic group. Careful examination of within-group
variations, such as those attributed to acculturation differences, have not
yet been applied to most studies of cultural diversity at the end of life.
As the science in this area moves forward, we will be able to better
understand not only differences between groups, but those within groups due
to education, age, gender, geographic location, degree of ethnic
homogeneity, social context, and individual acculturation. 13
<http://jama.ama-assn.org/issues/v286n23/rfull/#r13> References and the
list of Web sites at the JAMA Web site (see Author/Article Information
below) provide more nuanced variations and ranges of responses among and
within different ethnic populations.
Patient AutonomyThe Dominant Culture, the Dominant Mode
In the European American model, patient autonomy is the primary focus of
decision making at the end of life. Patient autonomy emphasizes the rights
of patients to be informed about their condition, its possible treatments,
and their ability to choose or refuse life-prolonging medical care. Advance
care directives (ACDs) are meant to ensure that patients' wishes concerning
end-of-life care are enforced, even when they are no longer able to speak
for themselves. 14-16 <http://jama.ama-assn.org/issues/v286n23/rfull/#r14>
This framework reflects core values of the dominant cultureindependence,
individual rights, and even fears of receiving too much care at the end of
life. While the emphasis on patient autonomy has clarified the legal status
of patients to refuse therapy and increased the comfort of physicians to
make these decisions, patients and families from other cultures may not
share these values and concerns 17
<http://jama.ama-assn.org/issues/v286n23/rfull/#r17> , 18
<http://jama.ama-assn.org/issues/v286n23/rfull/#r18>
FINAL CHOICES BY AN ELDERLY AFRICAN AMERICAN COUPLE
Responses to Inequities: Social and Historical Context of Trust in the
Clinical Encounter
MRS G: Because [an African American] doctor is the same nationality as
myself, that causes me to want to trust him more, because he could relate
better. Most of them have been there, even though they are above [it]they've
moved away from it. That helps, but like I said, as long as I know he's
qualified, it would make a difference [whether he is African American or
not].
Although Mr G has a do-not-resuscitate (DNR) order, opted for a palliative
approach to his lung cancer, and accepted home hospice, several studies in
diverse regions of the country and across practice settings have shown that
African American patients are more likely to want aggressive medical care at
the end of life 9 <http://jama.ama-assn.org/issues/v286n23/rfull/#r9> and
are less likely to have DNR orders or ACDs than European American patients.
19-23 <http://jama.ama-assn.org/issues/v286n23/rfull/#r19> For example, one
study of elderly outpatients in North Carolina found that African Americans
were almost 3 times as likely as white patients to want more treatment (42%
vs 15%), a choice that did not vary with education level. 24
<http://jama.ama-assn.org/issues/v286n23/rfull/#r24> Similarly, African
American outpatients in Miami were more likely to want life-prolonging
therapy than white patients (37% vs 14%). 7
<http://jama.ama-assn.org/issues/v286n23/rfull/#r7> McKinley et al 21
<http://jama.ama-assn.org/issues/v286n23/rfull/#r21> found that 37% of
African American cancer patients wanted cardiopulmonary resuscitation when
terminally ill, while only 16% of white patients would desire such
treatment. Only 3% of African Americans in this study had completed an ACD
vs 34% of white patients. Murphy et al, 22
<http://jama.ama-assn.org/issues/v286n23/rfull/#r22> in a study of elderly
patients from 4 different ethnic groups in Los Angeles, reported that only
2% of African American elders studied had an ACD (17% of those with
knowledge about ACDs) vs 28% of white subjects (40% of those with knowledge
about ACDs). Morrison et al 24
<http://jama.ama-assn.org/issues/v286n23/rfull/#r24> also found that
Hispanic and African American patients were less likely to have appointed a
health care proxy than white patients (20% and 31% vs 46%). In this study,
however, ethnicity was not significantly associated with ACD completion
after controlling for knowledge, age, availability of a health care proxy,
experience with life support, and attitudes toward family involvement. 24
<http://jama.ama-assn.org/issues/v286n23/rfull/#r24> Although African
Americans represent 12.3% of the US population, they comprise only 8% of
patients enrolled in hospice. 25
<http://jama.ama-assn.org/issues/v286n23/rfull/#r25>
Some have attributed these differences to mistrust of the medical system by
African American patients, and evidence exists to support the contention
that African Americans are less likely than white patients to trust the
motivations of physicians who discuss end-of-life care with them. In the
Miami study, Caralis et al 19
<http://jama.ama-assn.org/issues/v286n23/rfull/#r19> found that African
American patients were more likely to feel that they would be treated
differently and receive lower-quality treatment if they completed an ACD.
Other studies have also suggested that mistrust acts as a barrier to organ
donation, 26 <http://jama.ama-assn.org/issues/v286n23/rfull/#r26> and as a
reason not to participate in medical research. 27
<http://jama.ama-assn.org/issues/v286n23/rfull/#r27> In the Los Angeles
study mentioned above, African American elderly persons were more likely
than other groups to want life support under various conditions (for
example, 27% wanted CPR in the event of a coma with no chance of recovery vs
13% of whites, 22% of Mexican Americans, and 14% of Korean Americans). 20
<http://jama.ama-assn.org/issues/v286n23/rfull/#r20> Postsurvey interviews
to probe the reason behind the increased desire for life support uncovered
the belief that economic motivations were behind clinicians' decisions to
remove life support. Several subjects cited personal experience with
relatives prematurely removed from life support, or not placed on it,
including one woman whose son died of acquired immunodeficiency syndrome. He
was not placed on life support and her conclusion was, "They figured out, or
assumed, that I didn't have money so they weren't going to bother."
MRS G: We have a tendency to want to treat ourselves, but we don't have
enough trust . . . You know, most [doctors] use medical terms and big
terminology that's beyond us, and that tends to frighten us because we don't
know what [they're] talking aboutwe might think one thing and feel misled to
a point. We hear, but experience is different . . . sometimes experience can
be detrimentalyou don't want to keep doing that.
DR C: I don't think we have the institutional racism that we had 30 years
ago with the Jim Crow laws. But we have informal institutional racism,
particularly here in the South. The way we decide how we're going to fund
medical care and other kinds of services for people. And people are
smartthey know that.
Framing this whole issue as one of mistrust, however, is problematic.
McKinley et al 21 <http://jama.ama-assn.org/issues/v286n23/rfull/#r21>
found that although African American cancer patients wanted more
life-sustaining treatment than white patients, 96% trusted the medical
system and less than 20% feared inadequate medical care. More importantly,
as Crawley et al 28 <http://jama.ama-assn.org/issues/v286n23/rfull/#r28>
point out, framing the issue as one of mistrust implies that the main
problem is the attitude of African Americans. In fact, health care
institutions, both historically and in the present, have not always shown
themselves to be worthy of trust. 29
<http://jama.ama-assn.org/issues/v286n23/rfull/#r29> , 30
<http://jama.ama-assn.org/issues/v286n23/rfull/#r30> Trust is a critical
element in cross-cultural cooperation. The historical context of African
Americans' experience within the dominant medical culture in the United
States is the backdrop against which any discussion of trust must take
place. The Tuskegee syphilis study 31
<http://jama.ama-assn.org/issues/v286n23/rfull/#r31> , 32
<http://jama.ama-assn.org/issues/v286n23/rfull/#r32> and segregated
hospitals are in the historic memory of most older African Americans, and
current treatment disparities between African American and European American
patients are extensively documented. 33
<http://jama.ama-assn.org/issues/v286n23/rfull/#r33> Studies report less
use of cardiac procedures, 34-36
<http://jama.ama-assn.org/issues/v286n23/rfull/#r34> fewer surgeries for
lung cancer, 37 <http://jama.ama-assn.org/issues/v286n23/rfull/#r37> and
reduced access to renal transplantation for African Americans. 38
<http://jama.ama-assn.org/issues/v286n23/rfull/#r38> Similar disparities
exist for Hispanics, Asian Americans, and Native Americans. 39
<http://jama.ama-assn.org/issues/v286n23/rfull/#r39> Ultimately, until
disparities in access and quality of care are eliminated or at least greatly
reduced, simply encouraging African Americans and other ethnic minorities to
be more "trusting" of recommendations provided by European American
physicians is doomed to failure. Physicians can take steps outlined in Table
1 <http://jama.ama-assn.org/issues/v286n23/fig_tab/jel10001_t1.html> to
constructively address this issue.
Communication
MRS G: We always think we know what's best for us. And because we might not
understand the explanations and what's going on, we choose the easier way.
I'm not saying it's the better waybut because we don't really fully
understand, we just kind of stay in those same ways or traditions.
MR G: We're just ignorant to the facts that we don't understand.
Although Mr and Mrs G appear to be blaming themselves for not understanding
medical information, research has shown that African American patients have
unmet needs for communication. African American patients generally want to
be informed about the diagnosis and prognosis of a terminal illness, and
want to make decisions about medical care. 40
<http://jama.ama-assn.org/issues/v286n23/rfull/#r40> In the Study to
Understand Prognoses and Preference for Outcomes and Risks of Treatment
(SUPPORT), 23 <http://jama.ama-assn.org/issues/v286n23/rfull/#r23> African
Americans were among those most likely to want to discuss preferences for
CPR, but not to have done so (odds ratio, 1.53; 95% confidence interval,
1.11-2.11). A 1986 telephone survey found that African American patients
were more likely than European American patients to report that their
physician did not sufficiently explain test results, medical conditions, and
treatments. 41 <http://jama.ama-assn.org/issues/v286n23/rfull/#r41> A more
recent study 42 <http://jama.ama-assn.org/issues/v286n23/rfull/#r42> found
that African American patients were less likely than European Americans to
feel that their physicians included them in decision making. This was
particularly true for those in race-discordant patient-physician
relationships.
Of course African American patients are by no means alone in their desire
for better communication. Avoiding the use of medical jargon and checking
for understanding are 2 easy ways to reduce misunderstandings with patients
of any culture. 43 <http://jama.ama-assn.org/issues/v286n23/rfull/#r43>
When the patient speaks a language not understood by the physician, adequate
translation is vital. See Table 1
<http://jama.ama-assn.org/issues/v286n23/fig_tab/jel10001_t1.html> for
further details and suggestions on this topic.
Religion and Spirituality
Attitudes toward end-of-life care also may be influenced by religious or
spiritual concerns. 44 <http://jama.ama-assn.org/issues/v286n23/rfull/#r44>
, 45 <http://jama.ama-assn.org/issues/v286n23/rfull/#r45> In one study, 20
<http://jama.ama-assn.org/issues/v286n23/rfull/#r20> African American
participants revealed their beliefs that only God has knowledge aboutand
power overlife and death, and that physicians cannot have access to this
type of knowledge. One participant said "The doctor don't know everything.
God might come into it . . . He can do more for us than the doctor can."
Participants cited this belief as a reason for trying life support.
Similarly, Koenig and Gates-Williams 46
<http://jama.ama-assn.org/issues/v286n23/rfull/#r46> describe an African
American woman with advanced pancreatic cancer who rejected hospice and DNR
orders. She stated, "only God has priority over living. That's something man
can't tell youhow long you got to live." Crawley et al 28
<http://jama.ama-assn.org/issues/v286n23/rfull/#r28> point out that the
Christian religious view embraced by many in the African American community
holds that suffering is redemptive. It is to be endured, rather than
avoided. In this setting, forgoing life support in order to avoid pain and
suffering might be seen as failing a test of faith. Denial of death and a
willingness to undergo potentially painful and/or futile life support may in
fact be part of an "ethic of struggle." 28
<http://jama.ama-assn.org/issues/v286n23/rfull/#r28> This ethic of struggle
can be considered part of a moral strength that ensures a better place than
this one in a world in which African Americans often die younger than their
white counterparts.
FINAL CHOICES BY A CHINESE AMERICAN FAMILY
Truth Telling: Prognosis and Informed Refusal
MS Z: The prognosis for my mother was given very gently. And given in the
form of statistics. [The doctor] had a book of statistics out and said,
"This is the percentage of people who are still living after 1, 2, 3 years.
. . . " So it wasn't given verbally. I think it was mentioned very
delicately and I'm not sure how much of that information she actually took
in at the time. . . . We never discussed it after that.
Although informed consent is a major tenet of US health care, truth telling
about diagnosis, and especially about the prognosis of potentially fatal
illnesses like cancer, is not the norm in much of the world. 47
<http://jama.ama-assn.org/issues/v286n23/rfull/#r47> , 48
<http://jama.ama-assn.org/issues/v286n23/rfull/#r48> In Italy, 49
<http://jama.ama-assn.org/issues/v286n23/rfull/#r49> France, 50
<http://jama.ama-assn.org/issues/v286n23/rfull/#r50> and Eastern Europe, 50
<http://jama.ama-assn.org/issues/v286n23/rfull/#r50> as well as much of
Asia, 51 <http://jama.ama-assn.org/issues/v286n23/rfull/#r51> , 52
<http://jama.ama-assn.org/issues/v286n23/rfull/#r52> Central and South
America, 19 <http://jama.ama-assn.org/issues/v286n23/rfull/#r19> , 40
<http://jama.ama-assn.org/issues/v286n23/rfull/#r40> and the Middle East,
45 <http://jama.ama-assn.org/issues/v286n23/rfull/#r45> physicians and
patients often feel that withholding medical information is more humane and
ethical. A report by an Italian oncologist in 1992, 49
<http://jama.ama-assn.org/issues/v286n23/rfull/#r49> for example, describes
the decision-making style in Italy as one in which the patient is
"protected" from bad news by physicians and family. In a Greek population
survey, 48 <http://jama.ama-assn.org/issues/v286n23/rfull/#r48> only a
third of the respondents believed that patients should be told of a terminal
illness. Older respondents and those with less education were less likely to
favor truth telling. 53 <http://jama.ama-assn.org/issues/v286n23/rfull/#r53>
Patients who have emigrated from countries where truth telling is not common
often bring that perspective to medical encounters in this country. 10
<http://jama.ama-assn.org/issues/v286n23/rfull/#r10> , 40
<http://jama.ama-assn.org/issues/v286n23/rfull/#r40> , 51
<http://jama.ama-assn.org/issues/v286n23/rfull/#r51> Even in the United
States, as recently as the early 1970s physicians commonly withheld the
diagnosis of cancer. 54 <http://jama.ama-assn.org/issues/v286n23/rfull/#r54>
Not until 1979 did the first article note the practice trend of disclosing a
cancer diagnosis, 55 <http://jama.ama-assn.org/issues/v286n23/rfull/#r55>
and while open discussion of diagnosis has become the norm in this country,
discussing prognosis remains difficult. 40
<http://jama.ama-assn.org/issues/v286n23/rfull/#r40> One study of
oncologists published in 2001 found that only 37% would give a truthful
estimate of prognosis even when asked directly by the patient. 56
<http://jama.ama-assn.org/issues/v286n23/rfull/#r56> The reason often given
for withholding information about diagnosis or prognosis is that the truth
may be cruel and is potentially harmful to the patient. 49
<http://jama.ama-assn.org/issues/v286n23/rfull/#r49> , 51
<http://jama.ama-assn.org/issues/v286n23/rfull/#r51> Anecdotal reports note
the tendency of Chinese 7
<http://jama.ama-assn.org/issues/v286n23/rfull/#r7> and Ethiopian 57
<http://jama.ama-assn.org/issues/v286n23/rfull/#r57> families to oppose
truth telling because the patient would lose hope and suffer unnecessary
physical and emotional distress. In the Los Angeles study cited above, 40
<http://jama.ama-assn.org/issues/v286n23/rfull/#r40> 52% of Mexican
American patients stated that patients should not be told the truth about a
terminal prognosis. Within this ethnic group, older age, lower socioeconomic
status, and less acculturation were associated with a desire for less truth
telling. 40 <http://jama.ama-assn.org/issues/v286n23/rfull/#r40>
Ethnographic interviews revealed the belief that the truth should never be
told because it hastens death. 37
<http://jama.ama-assn.org/issues/v286n23/rfull/#r37> A Korean American
subject from the same study reported keeping his wife's cancer diagnosis a
secret, saying, "We kept it a tight secret . . . If she knew, she would not
be able to live longer because of the fear." 51
<http://jama.ama-assn.org/issues/v286n23/rfull/#r51> Only 35% of the Korean
American subjects in this study believed that a patient should be told of a
terminal prognosis. 29 <http://jama.ama-assn.org/issues/v286n23/rfull/#r29>
Ms Z reports that prognosis was discussed only indirectly with her mother,
and, as noted above, several authors have described the tendency toward
nondisclosure in Chinese society. 7
<http://jama.ama-assn.org/issues/v286n23/rfull/#r7> , 58
<http://jama.ama-assn.org/issues/v286n23/rfull/#r58> One recent study of
1136 Chinese persons in Hong Kong, 59
<http://jama.ama-assn.org/issues/v286n23/rfull/#r59> however, indicates
that the patterns of preferences for patients desiring information about
diagnosis (95%) and prognosis (97%) were similar to those in the United
States. Such findings emphasize the importance of being specific about the
group studied. For example, identifying all persons as "Chinese" whether
they come from rural mainland China, Hong Kong, or Taiwan may miss important
sources of variation.
The issue of truth telling is more complex than simply whether or not to
tell the truth. It also includes the problem of how to tell and to whom.
Even a patient who does not want direct disclosure may wish to know the
truth through other means: indirectly, euphemistically, "delicately" (as Ms
Z puts it), or nonverbally. In far east Asian cultures, such as Korean, 37
<http://jama.ama-assn.org/issues/v286n23/rfull/#r37> Chinese, 60
<http://jama.ama-assn.org/issues/v286n23/rfull/#r60> and Japanese, 61
<http://jama.ama-assn.org/issues/v286n23/rfull/#r61> , 62
<http://jama.ama-assn.org/issues/v286n23/rfull/#r62> nonverbal
communication is often acknowledged to be a vital means of interpersonal
connection. 63 <http://jama.ama-assn.org/issues/v286n23/rfull/#r63> "Zhih
Yi" is the Chinese term that denotes nonverbal communication, "just knowing
what the other thinks and feels," and the Japanese term "inshin denshin"
denotes a similar concept of knowing without being told. The Korean word
"nunchi" denotes understanding through social, nonverbal cues.
The purpose of indirect communication in these cultures is to preserve the
"face" of the other; that is, never to put the person one is talking to into
a position of embarrassment or loss of honor by directly posing potentially
sensitive questions. "Face," in the Asian sense, is the preservation of
family and community honor more so than individual honor. This proscription
against losing face applies to all verbal communication and conduct both
within and outside the family or community setting. 64
<http://jama.ama-assn.org/issues/v286n23/rfull/#r64> , 65
<http://jama.ama-assn.org/issues/v286n23/rfull/#r65> In these cultures,
indirect or nonverbal communication may be preferable, because the ambiguity
saves face 66 <http://jama.ama-assn.org/issues/v286n23/rfull/#r66> , 67
<http://jama.ama-assn.org/issues/v286n23/rfull/#r67> and allows for the
possibility of hope. 51 <http://jama.ama-assn.org/issues/v286n23/rfull/#r51>
In situations in which the family insists that the patient not be told, but
the clinician feels that some diagnostic or prognostic information needs to
be provided (eg, before radiation therapy or chemotherapy), one strategy is
to make an offer of information to the patient, allowing the patient
"informed refusal" (see Table 1
<http://jama.ama-assn.org/issues/v286n23/fig_tab/jel10001_t1.html> ). 51
<http://jama.ama-assn.org/issues/v286n23/rfull/#r51> , 68
<http://jama.ama-assn.org/issues/v286n23/rfull/#r68> The clinician
establishes with the patient who should receive all medical information and
make decisions regarding the patient's care. If the patient designates that
someone else be given this responsibility, this constitutes the patient's
informed refusal to be included in the discussions or decision making, and
this preference should be documented. 69
<http://jama.ama-assn.org/issues/v286n23/rfull/#r69> , 70
<http://jama.ama-assn.org/issues/v286n23/rfull/#r70>
Another strategy is to use a hypothetical case as described by Carrese and
Rhodes 71 <http://jama.ama-assn.org/issues/v286n23/rfull/#r71> in their
article describing decision-making styles among Navajo patients and
practitioners. This technique acknowledges the patient's and/or the family's
realistic fears, respects the need for indirect discussion, and implicitly
invites further questions. Apparently tangential statements by the patient
or family may be indirect questions, and indicate the desire for more
information. How the questions are answered requires sensitivity and skill
to gauge the degree of information sought. Direct confrontation may frighten
or offend the patient/family, and they may not pursue their inquiry. On the
other hand, they may appreciate bringing the questions to light. Responses,
therefore, may be indirect or couched as hypothetical, according to the
capacity of the patient/family ( Table 1
<http://jama.ama-assn.org/issues/v286n23/fig_tab/jel10001_t1.html> ). The
physician should regularly seek feedback from the patient/family to assess
their understanding of the progression of the disease and the treatment
plan, and their desire for additional information.
Family Involvement in Decision Making
Ms Z: I think there is a lot of pressure in the Chinese culture to take care
of your own and also be a part of the person's process. So I think my
ethnicity expressed itself in that my sister and I went to every medical
appointment with my mother and even sat in the room with the doctors.
The Patient Self-Determination Act, and statutes in the United States
allowing patients to enact durable power of attorney for health care and
other ACDs, 48 <http://jama.ama-assn.org/issues/v286n23/rfull/#r48> reflect
a commitment to the rights of individual patients to make decisions about
their care at the end of life. In other cultures, decision making may be
seen primarily as a duty of the family, whose responsibility it is to
protect the dying patient from the burden of making difficult choices about
medical care.
The familial mode of decision making is clearly the ethos described by Ms Z,
and is also common in many other cultures. In a study by Morrison et al, 24
<http://jama.ama-assn.org/issues/v286n23/rfull/#r24> 67% of Hispanic
patients believed that health care proxies were not needed when family was
involved (vs 12% of white and 19% of African American subjects). Korean
American (57%) and Mexican American (45%) elderly individuals were more
likely than European Americans (20%) or African Americans (24%) to believe
that the family should be the primary decision-maker. 40
<http://jama.ama-assn.org/issues/v286n23/rfull/#r40> Ethnicity remained the
most important predictor of decision-making style even after controlling for
socioeconomic status. 29
<http://jama.ama-assn.org/issues/v286n23/rfull/#r29> , 47
<http://jama.ama-assn.org/issues/v286n23/rfull/#r47>
A study of Japanese nationals in Japan and of Japanese Americans (both
Japanese and English speaking) demonstrated a preference for family-centered
decision making for advance care planning in all groups (M. Shinji, DMS,
oral and written communication, October 2, 2001). Although preference for
disclosure, willingness to forgo care, and views of advance care planning
shifted toward Western values as Japanese Americans acculturated, the desire
for group decision making was preserved, even among the most acculturated.
It is important to note that this is a matter of relative emphasis. Family
involvement in decision making occurs in all cultures. The question is: do
family members support the patient by encouraging him or her to make
choices, or do they express their love by taking on the decision-making
burden themselves?
Hospice Care: Filial Responsibility
Ms Z: I know there's often a great resistance to the idea of hospice or
placing people in hospice. A lot of the resistance comes from admitting that
the patient is dying. Or it feels like a failure of the medical system. I
think one of the reasons that Asians are resistant to hospice is that it
feels like a failure on the part of the caretaker . . . to take care. It
seems almost like giving up or admitting that the caretakers can no longer
take care of their own.
Consideration of hospice care places cultural values of families into bold
relief, and differences with mainstream hospice approaches become apparent
when we see that although ethnic minority populations now comprise over 25%
of the US population, they represent less than 17% of patients enrolled in
hospice. 28 <http://jama.ama-assn.org/issues/v286n23/rfull/#r28> Very few
of these are Asian Americans. Filial piety, which is an important concept in
many parts of Asia including Korea, China, and Japan, may partly account for
this.
Filial piety is the expectation that children will care for their parents
without question in gratitude for their parent's caring and sacrifices, and
infuses all aspects of a parent's care. 51
<http://jama.ama-assn.org/issues/v286n23/rfull/#r51> , 66
<http://jama.ama-assn.org/issues/v286n23/rfull/#r66> , 72
<http://jama.ama-assn.org/issues/v286n23/rfull/#r72> Hospice, which
constitutes accepting care from outsiders, may dishonor the parents by
sending the message within the family as well as to the community that the
family is unable to provide adequate care. Although data are lacking on this
point, it may be that broaching the topic of hospice, even with acculturated
Asian Americans like Ms Z and her sister, challenges the value of filial
piety and discussion must be calibrated with this in mind. ( Table 1
<http://jama.ama-assn.org/issues/v286n23/fig_tab/jel10001_t1.html> ). Asian
American families will use hospice services, but usually in the home and
usually with considerable oversight and control. This enables the family to
feel that they are still the primary caretaker, and that they are fulfilling
their filial obligation. Fulfilling family obligations as primary caretaker
may not appear to be different in form from any other ethnic group, since
members of most cultural groups would like to be able to care for their
loved ones at home. For Chinese, Japanese, and Korean groups, however, the
issue of face may be present. How well they fulfill their filial obligations
is open to community scrutiny and judgment, and would reflect poorly on the
parenting abilities of the parents and on the extended family if the
children do not fulfill their obligations. 65
<http://jama.ama-assn.org/issues/v286n23/rfull/#r65>
EVALUATING AND ADDRESSING CULTURAL ISSUES AT THE END OF LIFE
Mr G's perspective, noted in his opening quote, is the key to cross-cultural
communication: "you got to find out the identity of a person to even get to
know them . . . and he's got to open up and tell you these things." When the
physician and patient are from different cultural backgrounds, the physician
needs to ask questions that respectfully acknowledge these differences and
build the trust necessary for the patient to confide in him or her.
Physicians can use knowledge about particular cultural beliefs, values, and
practices to respectfully recognize a person's identity and to assess the
degree to which an individual patient or family might adhere to their
cultural background. One way to begin this dialogue is by evaluating
patients' and families' attitudes, beliefs, context, decision making, and
environment (ABCDE) ( Table 2
<http://jama.ama-assn.org/issues/v286n23/fig_tab/jel10001_t2.html> ). This
approach is adapted from work by Koenig and Gates-Williams. 46
<http://jama.ama-assn.org/issues/v286n23/rfull/#r46> The purpose of this
mnemonic is to help avoid the dual pitfalls of cultural stereotyping or
ignoring the potential influence of culture. In this way, the risk of
miscommunication may be reduced.
While understanding the patient as an individual in the context of culture
does not prevent conflicts over differing values, beliefs, or practices,
information gained from such an assessment serves to identify areas for
negotiation of conflicts should they occur. 18
<http://jama.ama-assn.org/issues/v286n23/rfull/#r18> When the physician and
the patient/family have some understanding of each other's perspective, such
negotiations can take place in an atmosphere of mutual respect rather than
frustration and misunderstanding. In the cases above, we have discussed the
context for potentially divisive issues such as "informed refusal" of
diagnostic or prognostic information, delegation of decision-making power to
the family, and increased desire for life support. Many other important
areas, including end-of-life customs or religious rituals that give meaning,
security, and solace in times of need and during life transitions such as
death, have been addressed in detail elsewhere. 45
<http://jama.ama-assn.org/issues/v286n23/rfull/#r45> , 73
<http://jama.ama-assn.org/issues/v286n23/rfull/#r73>
As the suggested lines of inquiry provided in Table 1
<http://jama.ama-assn.org/issues/v286n23/fig_tab/jel10001_t1.html> and
Table 2 <http://jama.ama-assn.org/issues/v286n23/fig_tab/jel10001_t2.html>
indicate, timely and sensitive investigation can begin to broaden options
available to the physician to explore cross-cultural differences. 3
<http://jama.ama-assn.org/issues/v286n23/rfull/#r3> When specific issues
(such as differing desires about truth telling, or reluctance to sign
informed consent documents) arise repeatedly, development of appropriate and
respectful institutional protocols may help avoid laborious negotiations in
each individual encounter. 29
<http://jama.ama-assn.org/issues/v286n23/rfull/#r29> , 74
<http://jama.ama-assn.org/issues/v286n23/rfull/#r74> The suggestions in
Table 1 <http://jama.ama-assn.org/issues/v286n23/fig_tab/jel10001_t1.html>
and Table 2
<http://jama.ama-assn.org/issues/v286n23/fig_tab/jel10001_t2.html> build on
the basic communication skills presented by numerous authors with various
mnemonics to promote more productive communication generally and at the end
of life. 43 <http://jama.ama-assn.org/issues/v286n23/rfull/#r43> , 75-77
<http://jama.ama-assn.org/issues/v286n23/rfull/#r75> The reader is directed
to the growing literature in cultural competency that addresses this need
and the many approaches being developed. 5
<http://jama.ama-assn.org/issues/v286n23/rfull/#r5> , 78-81
<http://jama.ama-assn.org/issues/v286n23/rfull/#r78>
"Cultural competence" is, however, not simply a moral or ethical obligation,
or a "nice thing to do." It is now the law. In December 2000, the Office of
Minority Health of the US Department of Health and Human Services released
national standards for culturally and linguistically appropriate health
services. 80 <http://jama.ama-assn.org/issues/v286n23/rfull/#r80> These
standards are primarily directed at health care organizations, though
individual providers are encouraged to use the same standards to make their
practices more culturally and linguistically accessible.
Institutions such as hospitals, home care and hospice agencies, and nursing
homes must take responsibility for facilitating culturally competent care.
This includes knowing the groups that most frequently use the institution,
seeking out and disseminating information about cultural beliefs that might
affect attitudes toward illness and health care, providing adequate
translation services, and identifying community resources. Hiring and
training health care workers (at all levels) who are members of the ethnic
group in question or knowledgeable about them, and who have credibility
within these communities, may assist greatly in bridging the cultural chasm.
Finally, note Mr G's comment about physicians eliciting a complete social
history from the patient: "the more you [the physician] know about this
person, his family, then that'll make you know more about you."
Reflecting on the ways culture shapes the patient's worldview invites
self-reflection about the physician's own biases, values, beliefs, and
practices. Cross-cultural experiences may also enrich the repertoire of the
physician with alternative ways to ease the dying process for patients,
families, and staff. Accepting this invitation enables the growth that is
the hallmark of cross-cultural communication skills. 56
<http://jama.ama-assn.org/issues/v286n23/rfull/#r56>
Author/Article Information
Author Affiliations: Community Health Sciences, University of California,
Los Angeles School of Public Health and Asian American Studies (Dr
Kagawa-Singer); Center for Palliative Care and Research, and Center for
Biomedical Ethics, University of Virginia, Charlottesville (Dr Blackhall).
Corresponding Author and Reprints: Marjorie Kagawa-Singer, PhD, MN, RN,
University of California, Los Angeles School of Public Health and Asian
American Studies, 650 Charles E. Young Dr, Los Angeles, CA 90095.
Funding/Support: The Perspectives on Care at the Close of Life section is
made possible by a grant from the Robert Wood Johnson Foundation.
Perspectives on Care at the Close of Life is produced and edited at the
University of California, San Francisco, by Stephen J. McPhee, MD, Michael
W. Rabow, MD, and Steven Z. Pantilat, MD; Amy J. Markowitz, JD, is managing
editor.
Other Resources: For a list of relevant Web sites and telephone translation
services, see below.
WEB SITES FOR CULTURAL HEALTH INFORMATION
EthnoMed
http://ethnomed.org <http://ethnomed.org>
Ethnic medicine information from Harborview Medical Center
Last Acts
http://www.lastacts.org <http://www.lastacts.org>
An online community dedicated to improving end-of-life care
Montana Area Health Education Center
http://ahec.msu.montana.edu/students/culture.html
<http://ahec.msu.montana.edu/students/culture.html>
Culturally Competent Health Care Web site
Office of Minority Health Information Center
http://www.omhrc.gov/clas <http://www.omhrc.gov/clas>
Assuring Cultural Competence in Health Care: Recommendations for National
Standards and Outcomes-Focused Research Agenda
Park Ridge Center for the Study of Health, Faith and Ethics
http://www.parkridgecenter.org <http://www.parkridgecenter.org>
Offers a series of books (Health and Medicine in the Faith Traditions)
giving general information about different religions
Resources for Cross-Cultural Health Care (Julia Puebla Fortier, Director)
http://www.diversityrx.org <http://www.diversityrx.org>
8915 Sudbury Rd, Silver Spring, MD 20901 (301/588-6051)
Telephone Services
Certified Languages International
http://www.clilang.com
<http://pubs.ama-assn.org/cgi-bin/buffer/http://www.clilang.com>
(800/237-8434)
Language Line Services
http://www.languageline.com
<http://pubs.ama-assn.org/cgi-bin/buffer/http://www.languageline.com>
(800/752-0093 x196)
Tele-Interpreters
http://www.teleinterpreters.com
<http://pubs.ama-assn.org/cgi-bin/buffer/http://www.teleinterpreters.com>
Online Interpreters
http://www.onlineinterpreters.com
<http://pubs.ama-assn.org/cgi-bin/buffer/http://www.onlineinterpreters.com>
(888/922-3582)
Perspectives on Care at the Close of Life Section Editor: Margaret A.
Winker, MD, Deputy Editor, JAMA.
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