Negotiating Cross-Cultural Issues at the End of Life
"You Got to Go Where He Lives"
JAMA. 2001;286:2993-3001
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
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 culture
European 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 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
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 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 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 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, 7 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
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 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 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, 10, 11 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
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).
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 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 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 concerns17, 18
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 life9 and are less likely to
have DNR orders or ACDs than European American patients.19-23 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 Similarly, African
American outpatients in Miami were more likely to want life-prolonging therapy
than white patients (37% vs 14%).7 McKinley et al21 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 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 al24 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 Although African
Americans represent 12.3% of the US population, they comprise only 8% of
patients enrolled in hospice.25
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 al19 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 and as a reason not
to participate in medical research.27 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 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 al21 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 al28 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, 30 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 study31, 32 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 Studies report less
use of cardiac procedures,34-36 fewer surgeries
for lung cancer,37 and reduced access to
renal transplantation for African Americans.38 Similar disparities
exist for Hispanics, Asian Americans, and Native Americans.39 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
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 In the Study to
Understand Prognoses and Preference for Outcomes and Risks of Treatment
(SUPPORT),23 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 A more recent study42 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 When the patient
speaks a language not understood by the physician, adequate translation is
vital. See Table 1
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, 45 In one study,20 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-Williams46 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 al28 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 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, 48 In Italy,49 France,50 and Eastern Europe,50 as well as much of
Asia,51, 52 Central and South
America,19, 40 and the Middle East,45 physicians and
patients often feel that withholding medical information is more humane and
ethical. A report by an Italian oncologist in 1992,49 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 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 Patients who
have emigrated from countries where truth telling is not common often bring
that perspective to medical encounters in this country.10, 40, 51 Even in the United
States, as recently as the early 1970s physicians commonly withheld the
diagnosis of cancer.54 Not until 1979 did
the first article note the practice trend of disclosing a cancer diagnosis,55 and while open
discussion of diagnosis has become the norm in this country, discussing
prognosis remains difficult.40 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 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, 51 Anecdotal reports
note the tendency of Chinese7 and Ethiopian57 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 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 Ethnographic
interviews revealed the belief that the truth should never be told because it hastens
death.37 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 Only 35% of the
Korean American subjects in this study believed that a patient should be told
of a terminal prognosis.29
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, 58 One recent study of
1136 Chinese persons in Hong Kong,59 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 Chinese,60 and Japanese,61, 62 nonverbal
communication is often acknowledged to be a vital means of interpersonal
connection.63 "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, 65 In these cultures,
indirect or nonverbal communication may be preferable, because the ambiguity
saves face66, 67 and allows for the
possibility of hope.51
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).51, 68 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, 70
Another strategy is to use a hypothetical case
as described by Carrese and Rhodes71 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).
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 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 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 Ethnicity remained
the most important predictor of decision-making style even after controlling
for socioeconomic status.29, 47
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 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, 66, 72 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).
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
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).
This approach is adapted from work by Koenig and Gates-Williams.46 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 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, 73
As the suggested lines of inquiry provided in Table 1
and Table 2
indicate, timely and sensitive investigation can begin to broaden options
available to the physician to explore cross-cultural differences.3 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, 74 The suggestions in Table 1
and Table 2
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, 75-77 The reader is
directed to the growing literature in cultural competency that addresses this
need and the many approaches being developed.5, 78-81
"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 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
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 Ethnic medicine information from Harborview
Medical Center Last Acts An online community dedicated to improving
end-of-life care Montana Area Health Education
Center Culturally Competent Health Care Web site Office of Minority Health
Information Center 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 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) 8915 Sudbury Rd, Silver Spring, MD 20901
(301/588-6051) Telephone Services Certified Languages
International Language Line Services Tele-Interpreters Online Interpreters |
Perspectives on Care at the Close of Life
Section Editor: Margaret A. Winker, MD, Deputy Editor, JAMA.
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