1. No category

A Discourse of Relationships in Bioethics: Patient Autonomy and End-of-Life Decision Making
among Elderly Korean Americans
Author(s): Gelya Frank, Leslie J. Blackhall, Vicki Michel, Sheila T. Murphy, Stanley P. Azen,
Kyeyoung Park
Reviewed work(s):
Source: Medical Anthropology Quarterly, New Series, Vol. 12, No. 4 (Dec., 1998), pp. 403-423
Published by: Blackwell Publishing on behalf of the American Anthropological Association
Stable URL: http://www.jstor.org/stable/649596 .
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GELYAFRANK
Department of Occupational Science and Occupational Therapy and
Department of Anthropology
University of Souther California
LESLIEJ. BLACKHALL
Pacific Center for Health Policy and Bioethics and Assisted Home Hospice
Thousand Oaks, CA
VICKI MICHEL
Loyola Law School
Los Angeles, CA
SHEILAT. MURPHY
Annenberg School for Communication and Department of Psychology
University of Southern California
STANLEYP. AZEN
Department of Preventive Medicine, School of Medicine
University of Southern California
KYEYOUNGPARK
Department of Anthropology
University of California at Los Angeles
A Discourse of Relationships in Bioethics:
Patient Autonomy and End-of-Life Decision
Making among Elderly Korean Americans
A two-year, multidisciplinary study (N = 800) was conducted on attitudes
about end-of-life decision making among elderly individuals in four ethnic
groups (African American, European American, Korean American, and
Mexican American). On a quantitative survey, Korean Americans reported
negative attitudes about the use of life-sustaining technology for themselves
butpositive attitudes about its use in general. This article reports on an interview with a 79-year-old typical Korean American respondent to explain the
contradiction in the survey data. Expectations among elderly Korean Americans include protecting family members with a life-threatening illness from
being informed of their diagnosis and prognosis, and doing everything to
keep them alive. Two conclusions, one substantive and the other methodological, are drawn: First, the bioethics discourse on individual rights (patient
MedicalAnthropology
Association.
Quarterly12(4):403-423.Copyright? 1998AmericanAnthropological
403
404
MEDICAL
ANTHROPOLOGY
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autonomy) is insufficientto explain the preferences of many Korean
Americansand must be supplementedwith a discourseon relationships.
Second,the rigoroususe of qualitative,narrativemethodsclarifies quantitativedata and should not be dismissedas "anecdotal."[bioethics,endof-life decision making,ethnicity,Asian Americans,qualitativemethods,
narrative]
I amtheonewhois goingto die;so I don'tcontrolthesituation.
-Mrs. Kim,79 yearsold,KoreanAmerican
immigrant
lthoughpatientautonomyhas been the dominantprinciplein bioethics in
the United States for the past 25 years,consensusaboutits overridingimportanceis beginning to crumble.' Researchershave begun to recognize
thatthe reigningconceptualizationof autonomyis limitedandillusory,andthatsocial relationshipsmay presentan equally and sometimesmore compelling frameworkfor bioethicsthanindividualrights(Callahan1996; Gaylin 1996; Gaylin and
Jennings 1996).2Empiricalresearchby medical anthropologistshas contributed
supportfor such critiques.For example, not all patientsexpect or want full disclosureabouttheircondition,andmanyprefertheirfamiliesto receiveandmanagesuch
information
(Goodet al. 1993;Gordon1994;GordonandPaci1997;Oronaet al. 1994).
Expectationsaboutpatientautonomymay cause confusion for some patients
when theirphysician,an expert,solicits theiropinion (Barneset al. 1994; Koenig
andMarshall1994; Marshallet al. 1998). The mere suggestionof an aggressiveor
invasivetreatmentoption such as mechanicalventilationmay be interpretedby patientsandtheirfamilies as a sign of hope: Why else, theyreason,would a doctorinflict pain?Moreover,patientsmay not explaintheirillness primarilyor exclusively
in termsof Westernbiomedicine.In traditionalsocieties aroundthe world, illness
and disability are commonly attributedto factors such as a breach in social relationshipssurroundingthe patientor supernaturalcauses. Such beliefs have implications for treatmentthat may conflict with biomedical procedures.3Consequently, clinicians often need a better fit between North American bioethics
principlesand the preferencesand decision-makingstyles of the diverse patients
they serve (Barker 1992; Davis and Koenig 1996; Koenig and Gates-Williams
1995;Marshall1992; Marshallet al. 1994; Muller 1994).
In the short history of bioethics as a discipline in the United States, patient
autonomyearnedits centralrole as a reactionto physicianpaternalism(Rothman
1991). It seems clearthatpatientsarebettersituatedthanphysiciansto evaluatethe
appropriatenessof available medical treatmentsin relation to their life circumstances. But the dilemmas faced in health-caredecision making often are not
framedas physicians versus patients.Rather,they are framed in terms of whom
physicians should converse with: patients, their family, or both. The discourse
aroundautonomyas the rightof individualpatientsdepictspatientsas being alone
andunaffectedby relationshipsand, thus, undercutsan appreciationof the importance of patient-familyinteractionsin medicaldecision making.4In this articlewe
argue that approaches to individual decision making that do not take relationships into accountare inadequate.As WillardGaylin writes, "Humanbeings are
PATIENT AUTONOMY AND END-OF-LIFE DECISION MAKING
405
productsof theirenvironmentas well as its creators;thereforeany considerationof
the individualindependentof his relationshipsand communitiesis self-defeating"
(1996:44).
Serious considerationof a discourse of relationshipsmay help bioethicists
and clinicians avoid certainproblemsthatarise when autonomy-basedpolicies are
appliedat the end of life, such as in the use of advancecaredirectives(ACDs). The
PatientSelf-DeterminationAct (PSDA) of 1991 requiresthathospitalsthatreceive
federalfunds informpatientsabouttheirrightunderexisting statelaws to createa
living will or durablepower of attorneyfor healthcare. Only a small percentageof
Americanshad an ACD in place when the law was passed, and proponentsof the
PSDA arguedthatincreasedpublic exposurewould resultin greateracceptanceof
ACDs (Fletcher1989; Levin 1990; see also E. J. EmanuelandL. L. Emanuel1990;
L. L. Emanueland E. J. Emanuel1989; L. L. Emanuelet al. 1991).5Currently,the
numberof AmericanswithACDs remainslow, andinterventionsdesignedto increase
use of ACDs typicallyhavefailedto generateutilizationratesof morethan20 percent
in targetpopulations(HareandNelson 1991;Jacobsonet al. 1994;Sachset al. 1992).
An even more compelling concern is thatEuropeanAmericans(whites) are
much more likely to desire or possess advance care directives than otherraces or
ethnicities (Blackhallet al. 1995; Caraliset al. 1993; Murphyet al. 1996; Sugarman et al. 1992; Teno et al. 1990). Such findings suggest thatgreaterpublicawareness alone will not significantlyincreasethe use of ACDs and thata betterunderstandingof the culturalfactorsthataffect their acceptanceis needed.6If bioethics
policies are to meet the needs of patientswhose values are differentthanthose of
the dominantwhite middle class,7more must be known about the diverse clinical
situationsin which life-and-deathdecisions aremade.
Methods
This article stems from the two-year study "Ethnicityand Attitudestoward
Advance Care Directives,"which surveyed 800 individuals,age 65 and over, residing in and aroundLos Angeles. The sample included 200 self-identifiedmembers in each of fourethnicgroups:AfricanAmerican,EuropeanAmerican,Korean
American,and Mexican American.In year one, attitudesabout end-of-life decision making were elicited in face-to-faceinterviews by ethnically matchedinterviewers who used an extensive surveyprotocol.In year two, in-depthethnographic
interviews,two hours in length, were then conductedwith ten percent(n = 80) of
the original sample, in the individual'spreferredlanguage,by ethnicallymatched
anthropologistconsultants.8These interviews were treatedas conversations,that
is, as coconstructedspeech events (Gubriumand Holstein 1994; Mishler 1986).9
The excerpts quoted in this article are presentedin their actual sequence and in
question-and-answerformat,ratherthan as a monologue, to emphasize their coconstructionby the interviewer.
A subsamplein each ethnic group (n = 20) was selected for in-depthinterviews by first creatinga pool including only those individualswhose survey responses were typicalfor thatethnicgroup.In determiningtypicality,we paidattention particularlyto dimensions of the survey on which the four ethnic groups
showed statisticallysignificantdifferences.Attitudesaboutpatientautonomywere
the core items of analysis,with a few additionalitems basedon the uniqueresponse
patterns for each ethnic group. Core items concerned physician truth telling
406
MEDICALANTHROPOLOGY
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(Should the physician inform the patientabout a diagnosis of metastaticcancer?
About a terminalprognosis?)and medical decision making (Who should make a
decision aboutthe use of life-sustainingtechnology:the physician,family, or patient?). Of the 20 KoreanAmericansinterviewedin depth, 18 were chosen from
the typicalcase pool. Next, two atypicalcases not in the pool were also selectedto
provideinsightinto the diversitywithinthe KoreanAmericansample.
One participant,Mrs.Hye-ranKim, was a typicalcase. Herviews represented
those of the KoreanAmericansamplegenerallyand were distinctfrom the views
of the threeotherethnic groups.Mrs.Kim's life story demonstrateshow a familycenteredapproachto medical decisionmakingis partof a broaderKoreancultural
pattern.10
Ideally, the roles and responsibilitiesof family memberstowardone another,ratherthanself-interest,constitutethe paramountguidefor moralaction.Such
values are modeled by parentsto children,articulatedas explicit principlesof behavior,andreinforcedthroughsocial sanctionsto become an intrinsicpartof one's
character.
Mrs.Kim's case was also typicaldemographically:In 1990 the Koreanpopulation in the United States was 798,849 (U.S. Departmentof Commerce 1992).
More thanhalf of the Koreanimmigrantshave settled on the West Coast;the largest population,an estimated200,000, lives in Los Angeles (Bandon 1994). Among
the fourgroupsin our study,KoreanAmericansarethe most recentto immigrateto
the United Statesand tend to speakonly Korean.Most areparentsof highly skilled
workersand professionalswho enteredfrom South Korea as adultsunderliberalized immigrationpolicies establishedby Congress in 1965. Not surprisingly,the
elderly KoreanAmericanswere the least acculturatedgroupin the study," having
been in this country an average of 12 years. Indeed, Mrs. Kim emigratedfrom
Seoul 12 yearspriorto the studyand spoke Koreanonly. Like most of the Korean
Americanswhom we interviewed,she was a permanentresidentin Californiaand
was enrolledin Medi-Cal(the federal-stateMedicaidprogramin California).12
The qualitativemethodsused by manymedical anthropologists,includingthe
sophisticatedanalysisof life storiesandothernarratives,arefrequentlyoverlooked
or dismissed as "merelyanecdotal"by quantitativelyorientedclinical researchers.
Ouruse of a rigorousmultimethoddesign,'3however, made it possible to use narratives to explain an otherwiseincomprehensiblecontradictionin the surveydata:
Although KoreanAmericansreportedextremely negative attitudesabout the use
of life-sustainingtechnology (LST) for themselves, they were extremelypositive
about its use generally.'4Mrs. Kim explains this paradox:Although she did not
want to be kept alive by LST, she believed thatit is her children'sduty to makethe
decision forher.In her view, familymembersareobligatedto protectpatientsfrom
learning that their illnesses are life threateningand must strive to keep patients
alive "evenone moreday."
Korean American Attitudes about Patient Autonomy
A summaryfollows of KoreanAmericanattitudesabout patient autonomy,
based on a quantitativesurveyconductedduringthe first year of the study (Blackhall et al. 1995). A stepwise multiplelogistic regressionanalysis showed thatethnicity is the most significantfactorto accountfor differencesin attitudesaboutpatient autonomyreportedby the four ethnic groups.Ethnicity accountedfor more
407
PATIENT AUTONOMY AND END-OF-LIFE DECISION MAKING
TABLE 1
answers
to
the
Respondents'
question "Should the doctor tell the patient a diagnosis of
metastaticcancer?" (p <.001).
AfricanAmericans
EuropeanAmericans
Mexican Americans
KoreanAmericans
Yes
No
89%
87%
65%
47%
11%
13%
35%
53%
variability among the 800 respondents than did other demographic factors such as
age, sex, religion, level of functional independence, level of education, and income.'5
Among the groups surveyed, Korean Americans were the least likely to believe that patients should be told the truth about the diagnosis and prognosis of a
serious illness. Less than half (47%) agreed that doctors should tell patients about a
diagnosis of metastatic cancer (see Table 1). Only 35 percent agreed that doctors
should tell patients that they are dying (see Table 2).
TABLE 2
Respondents' answers to the question "Should the doctor tell the patient that they are
dying?" (p < .001).
EuropeanAmericans
African Americans
Mexican Americans
KoreanAmericans
Yes
No
69%
63%
48%
35%
31%
37%
52%
65%
Korean Americans were most likely to believe that family members rather
than patients should make decisions about the use of life-sustaining technology.
Only 28 percent believed that patients should decide whether or not to use LST. A
majority of Korean Americans (57%) believed that decisions about LST should be
made exclusively by the family (see Table 3). (All differences cited above are statistically significant at the p < .001 level.)
TABLE 3
Respondents' answers to the question "Who should make the decision whetherto put
the patient on life support?"(p < .001).
EuropeanAmericans
AfricanAmericans
Mexican Americans
KoreanAmericans
The patient
The family
65%
60%
41%
28%
21%
26%
46%
57%
The doctoror other
designatedperson
15%
15%
14%
16%
408
MEDICALANTHROPOLOGY
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TABLE 4
Respondents' likelihood of possessing an advance care directive(ACD) (p < .0001).
Americans
European
MexicanAmericans
AfricanAmericans
KoreanAmericans
28%
10%
2%
0%
Contraryto stereotypesaboutKoreans,talkingin advanceaboutdeath,even
theirown deaths,is not completely prohibited.ElderlyKoreanAmericanstend to
acceptdeathas a partof life: Virtuallyeveryonewe interviewedin year two of the
studywas a memberof a mutualaid society (rotatingcreditunionthatfunctionsas
a burialsociety) and had alreadymade funeralarrangementsfor themselves. But
KoreanAmericanswere the most likely of our studyparticipantsto agreethat discussing deathwith a doctorcould be dangerousto patientsand thatadvanceplanning is not necessarybecausefamilies will know what to do when the time comes
(Murphyet al. 1996).
TABLE 5
Likelihood of possessing an advance care directive(ACD) among respondents who had
knowledge of ACDs (p < .001).
Americans
European
MexicanAmericans
AfricanAmericans
KoreanAmericans
40%
22%
17%
0%
As reportedin Murphyet al. 1996, KoreanAmericanswere also least likely
(0%)to possess an advancecare directive(ACD) (see Table 4). Even among individualswho hadknowledgeof ACDs, KoreanAmericanswereless likely thanothers to have an ACD in place. Of the 200 KoreanAmericanssampledin year one,
only 20 had knowledge of ACDs, and of these, not one possessed a living will or a
durablepower of attorney(see Table 5).
The Case of Mrs. Kim: A Narrative Approach
A narrativeapproachmade it possible to clarifyMrs.Kim's decision-making
preferencesandpractices.16We paid explicit attentionto her use of Koreanethical
principlesor values such as tori (duty, literally, "the properway of life")17 and
hyodo (filial piety) throughthe stories she told abouther experiencesand expectations in healthcaresettings.In Excerpt1, for example,Mrs.Kim talks aboutherexperienceas a patientin which her family hid the fact of a cancerdiagnosis. Seven
yearspriorto the interview,Mrs.Kim discoveredthatshe was having a vaginaldischarge.She informedher youngest daughter-in-lawaboutit and was takento see a
Western-styledoctor who scheduled an operation.'8Before the operation took
place, a periodduringwhich Mrs. Kim was takingtraditionalChinese medicines,
her dischargestopped.Mrs. Kim's story makes the point that families should not
PATIENT AUTONOMY AND END-OF-LIFE DECISION MAKING
409
inform a patient about a diagnosis of cancer, even though the patient is naturally curious. Her children, not she, were responsible for making the decision about her treatment.
Excerpt1
Hye-ranKim: So I told my childrenthatI didn'tneed the operationbecause
the dischargehad stopped.My childrentold me thatI should
follow the doctor's instructionsanyway;I should have the operation.After the operation,I was fine. For a year laterthey
didn't tell me the truth.Then aftertwo years, they disclosed that
I hadhad cancer-the early stage. So the doctortook out half of
my womb, not all.
Interviewer: Didn't you want to know [whatyourdisease was]?
HRK:
I would feel like a fool who didn'tknow enoughto be curious
abouther own disease. [But]my childrendid a good thingfor
me, not a badthing. If I hadresearchedwhatit was, then it
would be bad for everyone.
In Excerpt 2, Mrs. Kim explains in greater detail why it is unwise for patients
to know their diagnoses. Disclosing a diagnosis of cancer to patients causes them to
suffer and leads them to think obsessively about dying. When Mrs. Kim reflects
upon her own case, she believes it was better to avoid such suffering.19
Excerpt2
Int:
HRK:
If anyone in yourfamily hadcancer,do you thinkit would be
good to tell the personabouttheirdisease?
Reflecting on my experience,if the patientwere to know their
disease, it would cause anguish.So I thinkit would be betternot
to informthe patient,andin thatway the patientcould pass
away less fearfully.In the case of cancer,the patientcannotstop
thinkingabouttheirown death:it is not good.
In Excerpt 3, Mrs. Kim comments on the use of life-sustaining technologies
such as CPR or mechanical ventilation on patients with a terminal prognosis. Although Mrs. Kim has not witnessed the use of LST among her friends, she is emphatic that it is not good to prolong the life of a fatally ill person.
Excerpt3
Int:
HRK:
Int:
HRK:
Int:
Then, among your friends,was thereanyonehospitalizedfor a
seriousdisease?
So far, none. In the [Buddhist]temple,20I see 85-, 86-year-old
people. They come to the templeeven thoughthey don't have
much energy. But they still come to the temple.
... Then you haven't known anyone living in bed with an oxy-
gen mask for a long time?
None I know.
Accordingto Americanlaws, as long as the patient'sbreathing
is not stopped,the patientwill remainalive regardlessof the
chance of resuscitation,whetherthe patientis conscious or not.
Then, if the functionof eitherthe heartor the lung stops, by using CPR they keep the patientalive. How do you feel aboutthis?
410
MEDICAL
ANTHROPOLOGY
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HRK:
In my opinion,if the patientdoesn't have a chanceto live, then
not using CPRwould be better.If theirlife is prolonged,it
causes burdensto the childrenat home. In hospital,it is less burdensometo the children.Attendingthe patientis a bother.I
don't thinkthatit is good for the fatallyill patient'slife to be
prolonged.The one who would pass away shouldpass away.
In Excerpt 4, Mrs. Kim discusses the difference between dying in the hospital
and dying at home. Her concerns are expressed in terms of burdens placed on the
children. In Korea, dying at home is preferred. But even though Mrs. Kim prefers to
die at home, she sees no alternative to the American way of dying in the hospital.
Mrs. Kim surprises the interviewer by suggesting, however, that dying in the hospital might be better than the Korean way because it relieves the family's responsibility to observe certain onerous rituals.
Excerpt4
Int:
HRK:
Int:
HRK:
Int:
HRK:
Int:
HRK:
Int:
HRK:
Int:
HRK:
In America,people die in the hospital.And in Koreapeople usually die at home. How do you thinkaboutthis?
In Korea,peopledie at home. It is the custom.Allowing the patientto die at home is the children'sresponsibility.If the childrenlet the patientdie in the hospital,people would regardit as
not being filial. The Americanway is good, isn't it?
Do you like the Americanway better?
Yes, it doesn'tbotherthe childrenso much.If the patientpasses
away in the hospital,they take the corpseto the morgue[laughing]. Thenit looks too lonely for the deadperson.In thatcase,
no one goes to see the corpse in the hospitalexcept occasionally. The family stayshome. When I went to console a family
who lost theirmother,the family stayedcomfortablyat home.
Shouldthey stay up all night like in Korea?
Sure.Sometimesthe Koreantraditionworksbetterin thatcase,
butforbeingsimpleandpractical,theAmericanway is goodtoo.
Hypothetically-it is only "if'-what would you like at the
time of yourdeath?
If I died here,the Americanway would be applied,andif I died
in Korea,thenKoreanways shouldbe followed. Don't you
agree?How can people ignorethe custom?
Which would you like better?
I don'taskthemto followtheKoreanway if I die in America,do I?
It meansyou preferthe Koreanway.
Yes, but it is not possible. And in Korea,it is not possible to use
the Americanway.2'
In Excerpt 5, Mrs. Kim is presented with a scenario about the use of LST with
a terminally ill cancer patient. She describes what are proper decisions for various
family members. The excerpt exemplifies Mrs. Kim's view of patient autonomy.
The dominant principle is the fulfillment of responsibilities embedded in family relationships: One must do one's best for a family member, whether parent, child, or
spouse. One must do everything to avoid letting a family member die. Family
members, not dying patients, are expected to make medical decisions.
PATIENT AUTONOMY AND END-OF-LIFE DECISION MAKING
Excerpt5
Int:
HRK:
Int:
HRK:
Int:
HRK:
Int:
HRK:
Int:
HRK:
Int:
HRK:
411
If the patientwere yourrelative,then whatkindof decision are
you supposedto make?
If the patientweremy child, then I would ask themto use the
treatmentin orderto see my child alive even one more day.
If the patientwere yourparent?
If my parentwere aged andin such condition,well... as I
would behavetowardmy child, I also would ask the same thing.
I shouldn'tlet themdie. I would trymy best.
If the patientwere you, then whatdo you expect yourchildren
would decide for you?
If my childrenwantedto see me even one moreday, then they
mightask for the treatment.I am the one who is going to die; so
I don't controlthe situation.
Whenyou thinkaboutthe decision rightnow, would you want
the treatmentin orderfor your life to be extendedif you were
not conscious andhad almostno hope to live?
I would ratherpass away sooner, if by having my life extended
it causedpain.
But for others,you would ask for the treatmentto extend the
life?
In othercases, if the patientwere eithermy child or my husband,thenI wouldrequestthe treatmentin orderto see them
even a little longer.
Then isn't thatcontradictory?
Althoughit's a contradiction,it's the rightthing to do [tori].
Don't you thinkso? Would any childrenlet theirmotherdie
withouttryingto save her by any means?
Seen against the background of the North American bioethics discourse on individual rights, Mrs. Kim's statement in the preceding excerpt is startling: "I am the
one who is going to die; so I don't control the situation." Mrs. Kim appreciates the
contradiction in wishing to avoid medically futile treatment while giving control to
family members who are obligated to ask for it. But, she says, giving control to her
family members is more important, that is, tori, "the right thing to do."
In Excerpt 6, Mrs. Kim elaborates on her views about the use of LST and ACDs.
In common with other Korean Americans interviewed, Mrs. Kim expresses her
willingness to accept death as a part of old age: "If I had such a terminal disease,"
she says, "then I would not have them use such treatment, since I have lived long
enough." She further states that it is not good to sign an ACD in advance because
the future cannot be known. She prefers her family to make any necessary decisions
when the time comes.
Excerpt6
HRK:
Int:
HRK:
If I were in a certainterminalcondition,I would not want them
to use it [LST]unless the treatmentcould makeme live again.
In my opinion,if I had such a terminaldisease, then I would not
have themuse such treatment,since I have lived long enough.
If therewere a documentedarrangementin which the potential
patient'sown decision were representedwith theirsignature,
would you wantthis arrangement?
I don't like to putmy signatureon anythingin advance.
412
MEDICAL
ANTHROPOLOGY
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Int:
HRK:
Int:
HRK:
Why?
You neverknow your futureor yourfate;so why decide in advance?
Then you would wantyour family to decide later?
Yes. My family.
In Excerpt 7, the interviewer skillfully engages Mrs. Kim in a fuller consideration of ACDs, appealing to her sense of tori.
Excerpt7
Int:
HRK:
Int:
HRK:
Int:
HRK:
Int:
HRK:
Int:
HRK:
Don't you thinkthatsuch decision makingmightbe burdensome for your family?
WhenI thinkaboutotherpeople whose lives areextendedby
medication[whose lives otherwisewould end], thenI thinkthat
it is betterfor those patientsto pass away gracefullyinsteadof
being treatedwith the medication.This is my opinion.
But the hospitalandthe childrenof those patientshave no
choice, do they?
In the United States,by takingmedication,terminalpatients'
lives areextended;so therearesome patientswhose lives are
prolongedin thatway for even a year.
So the patient'sown decision is important.Whenthe patientis
conscious, if they put theirown signatureon the papersaying
thatthey don't wantsuch treatment,then such treatmentwould
be avoidedlateron.
But what if patientsdesire to live longer?WhenI observepatientshere, I believe they all wantto have such treatment.
Then would you put your signatureon suchpapers?
Sure.Why shouldmy life be prolongedif therewere no chance
of living?
But beforeyou said you wantedyour family to decide.
Well, if I got a terminaldisease, I would ratherpass away
sooner,but I don't know how my childrenwould deal with the
situationeven if I put my signatureon the papersyou described.
Several important points are raised here: First, Mrs. Kim actually reconsiders
her position and says she would sign an ACD. Second, she appears to be influenced
less by the argument based on tori ("Don't you think that such decision making
might be burdensome for your family?") than one based on patient autonomy
("Well, if I got a terminal disease, I would rather pass away sooner."). Third, and
most important for an accurate analysis of her narrative, however, Mrs. Kim affirms that her views in this part of the interview are only hypothetical ("But I don't
know how my children would deal with the situation even if I put my signature on
the papers you described"). She expects her children to interpret their tori as a mandate for using LST regardless of any statement that she might sign in advance.
In Excerpt 8, the interviewer and Mrs. Kim discuss the general impermissibility of talking to a person about his or her death. Such conversations are necessary,
of course, for implementing the Patient Self-Determination Act and for completing
ACDs. Mrs. Kim, like other Korean Americans we interviewed, states that it is inappropriate to talk to a person about his or her death. But she is willing to discuss
PATIENT AUTONOMY AND END-OF-LIFE DECISION MAKING
413
her own death in the interview because she draws a sophisticated distinction between "research" and "real life."
Excerpt8
Int:
HRK:
Int:
HRK:
Int:
HRK:
In orderto use thepaperthatI mentioned,it is necessaryto talk
aboutdeathwhen the potentialpatientis still conscious and
healthy.Whatdo you thinkaboutthis?
It is not good to talkaboutdeathin advance.
Even for the old people?
I am also old. Althoughthe personmay be old, to talkon this issue in advanceis not good. If askedto sign such papers,without
knowing one's future,how could I sign them?
Then you don't feel good talkingaboutit with me?
Yes, thatis fine. If it is aboutresearchandnot real life, fine.
In Excerpt 9, Mrs. Kim is asked her opinion about how an ACD should be presented to a patient. She continues to speak hypothetically for purposes of the research interview, straddling a discourse of relationships (tori) or duty and a discourse of individual rights (patient autonomy). Mrs. Kim feels that the physician
alone should offer the ACD. The document should be presented for her signature in
a conversational style, in which her questions can be answered.
Excerpt9
Int:
HRK:
Int:
HRK:
Int:
HRK:
Wouldn'tsome people feel reluctantto sign? Whatdo you think
aboutthat?
Concerningthe signing, if I becamesick and were asked to do
this, then I would do it, butnow, since I don't know aboutmy
future,my signaturewould not apply.
In thatcase, who shouldask you to preparethe paperwork,to
makedecisions with a signature?
Can therebe anyoneelse besides the doctor?
How should the doctorapproachyou aboutit?
He shouldtell me thatmy disease is such andsuch, and ask me
whetherI like this way or thatway. Then I might have my own
preference. The process should be done in this question-andanswerstyle.
In Excerpt 10, Mrs. Kim once again makes clear the conditional and hypothetical nature of her comments.
Excerpt 10
Int:
HRK:
Int:
HRK:
If the patientbecomes criticalandthen unconscious,then how
can the doctorknow whatthe patientwants?
For me, I would say to the doctorthathe shouldlet me be: not
use medicine.
If you were not conscious, so you were not able to talk to your
doctorlike that,then what?
Then my sons shoulddecide. If they wantto see me even one
more day, they would ask the doctorto use medicine,or if they
wantme to pass away peacefully,thenthey would decide the
otherway. It's up to themat thatpoint.
414
MEDICALANTHROPOLOGY
QUARTERLY
Int:
HRK:
I haveinterviewed
severalKoreanpeopleonthisissue,andthe
mostdifficultthingformeto understand
is whytheintervieweesthemselveswouldn'twanttreatment,
buttheywouldpermit
thetreatment
if thepatientsweretheirparents,in ordertoprolongtheirlivesbyevena day.
Sure.Thatis therightbehaviorforchildren.If peopleheardthat
a childhaddecidedto endtheirparents'lives,theywouldregardthechild'sbehavioras unfilial.Itis okayformeto talk
aboutmyself,butthat'sbecausetherearenochildrenwhosay,
"Letmymotherpassaway."If theyshouldaskmeto decideon
myown,thenI wouldprefertopassawaysoonerwithoutpain.
End-of-lifedecisionsaremorethana matterof personalconsciencein the Korean American community.Childrenwho "decided to end their parents' lives"
would be judgedharshly.In the interview,Mrs.Kim points out thatshe may freely
hypothesize signing an advancecare directive limiting end-of-life treatmentbecause she is confidentthather childrenwill not say, "Letmy motherpass away."
She expects themto overrideany limitationon treatmentto whichtheirmothermay
have agreedin the ACD.
Implications of the Korean American Data: A Discourse of
Relationships in Bioethics
KoreanAmericanattitudesabout end-of-life decision making center on the
importanceof relationshipsand the responsibilitiesof family membersratherthan
on patientautonomy.Suchbeliefs andpracticesderive from the traditionalculture
of Korea,22which has much in common with the cultures of neighboringEast
Thereis diversityamong KoreanAmericans,much of it condiAsian countries.23
tioned by adaptationsmadeto life in the United States.24Mrs.Kim soundscontent
and secure in her relationshipwith her children. Although the attitudesshe expresses are typicalof our sample,not all of the KoreanAmericanswe interviewed
were as confidentof theirchildren'sactualsupportas Mrs. Kim. Respondentsfrequentlymentionedthateconomicpressures,arisingespecially when adultchildren
andtheirspousesareemployedfull-timeor live in anotherpartof the country,contributedto intergenerational
tensions and disappointmentsin fulfilling traditional
Koreanfamily ideals.
If childrenlack adequatefinancialresources,for example,theymaybe unable
to requestfurthertreatmentfor theirparents.Living arrangementsare also critical.
Whenchildrenresideaway fromtheirparents,in Koreaor elsewhere,it is very difficult for themto fulfill theirtraditionalfamilialduties. Mrs. Kim assumesthatthe
Korean Americanfamily will function much the same as in Korea. But notions
such as filial piety are undergoingmodification in the United States. Changing
gender roles and economic stresses that result in women's fuller participationin
the laborforce make it difficult for wives, daughters-in-law,and otherfemale kin
to provide the same level of supportfor parentsthat was expected of them traditionally. Other institutionalpressures, including the implementationof federal
laws such as the PatientSelf-DeterminationAct and state laws thatlimit how long
a family may keep a corpseat home, also tend to force change. The resultis not so
much a wholesale switchfrom traditionalKoreanto white Americanmiddle-class
PATIENT AUTONOMY AND END-OF-LIFE DECISION MAKING
415
values as it is the creation of a new syncretic ethnic culture (Kim and Hurh 1993;
Park 1989).
Koenig and Marshall (1994) argue that social scientists cannot "biopsy" attitudes or develop an "ethnic algorithm" that can be plugged into multicultural clinical situations and result in neat bioethical solutions. Every case is individual and
circumstantial. Physicians need to negotiate with patients the treatments that will
be acceptable for them, given a range of attitudes and practices within the patient's
family and ethnic group. These negotiations require more than translation of autonomy-based bioethics policies across "language barriers" (Woloshin et al. 1995).25
A physician's discussion of end-of-life treatment decisions directly with elderly
Korean American patients rather than their family may itself be experienced by the
patient as impolite or even a violation. A number of bioethicists and social scientists have begun to address how to negotiate cultural factors in clinical ethics consultation (Heitman 1994; Jecker et al. 1995; Marshall and Koenig 1996; Orr et al.
1995). Before employing the otherwise promising strategy of dialogue with patients about specific treatment choices (Benjamin 1990), physicians must first
reckon with family relationships as a locus of ethical responsibility and decision
making.26
In other words, a discourse on relationships should supplement the discourse
on individual rights. Although these discourses may seem to be mutually exclusive, as Mrs. Kim's case has shown, they are not. In its report Deciding to Forego
Life-Sustaining Treatment, the President's Commission for the Study of Ethical
Problems in Medicine and Biomedical and Behavioral Research stresses that physician respect for the patient's values is one of the elements of good decision making: "The only time that the Commission finds it justified for a patient who could
be informed and involved to be excluded is when that patient freely and knowingly
transfers some decision-making authority to another" (1983:51 ).27We are not talking here about family members overriding the patient's autonomy. Most elderly
Korean Americans in our study such as Mrs. Kim are saying, in effect, "Giving
control to my family is the right thing. It is what I personally prefer and is my expression of autonomy."
NOTES
Acknowledgments.This is a reportfrom the study Ethnicityand AttitudestowardAdvance CareDirectives,which was fundedby the Agency for HealthCarePolicy Research,
Grant No. R01HS0700101A1, Leslie J. Blackhall, principal investigator.The grant was
sponsoredby the Pacific Centerfor HealthPolicy and Ethics, Universityof SouthernCalifornia.The authorswish to thankSung-joo Ko for his work as interviewer,transcriber,and
translatorfor the KoreanAmericaninterviews.For theirsupportandcomments,we wish to
thankDavid Blake, AlexanderM. Capron,Soo-Young Chin, David A. Goldstein,Deborah
R. Gordon,SharonR. Kaufman,BarbaraA. Koenig, HenryLambert,PatriciaA. Marshall,
and BarbaraMalcolm.A draftof this articlewas presentedat the AmericanAnthropological
Association AnnualMeeting,Washington,DC, November 16, 1995, at the session "Narrative as Constructand as Construction:Stories in a World of Illness,"organizedby Cheryl
MattinglyandLindaGarro.
Correspondencemay be addressedto the first authorat the Departmentof Occupational Science and OccupationalTherapy,University of SouthernCalifornia,Center for
HealthProfessions 133, 1540 E. AlcazarSt., Los Angeles, CA 90033.
416
MEDICALANTHROPOLOGY
QUARTERLY
1. The principleof patient autonomyholds that individualshave the right to control
what happensto them and, in particular,to make informeddecisions about their medical
care (President'sCommission 1983). Accordingto this principle,patientsshouldbe told the
truthabout their diagnosis and prognosis, about the risks and benefits of proposed treatments, and they should have the right to make decisions based on this information
(BeauchampandChildress1994).
2. Callahan's(1996) positionin the bioethicsdebateaboutautonomyis thatamongthe
four principlesin the "Georgetownmantra"(autonomy,beneficence,nonmalfeasance,and
justice),justice should sometimes take priority.This defies the conventionalposition held
by Veatch(1996), for example,thatno principlecan trumpautonomy(i.e., justify overcoming the individual'sright to decide). In our study, we arguenot that autonomy should be
overcomebut thatit is morecomplicatedthanrepresentedby eitherposition.The CallahanVeatchdebaterelatesto a more generalone aboutthe properfoundationsfor ethics. Rawls
(1971) arguesthat a just system is one in which laws aboutspecific kinds of situationsare
basedon the judgmentof rationalindividualsin the "originalposition"(i.e., not presentlyin
the situationthemselves).In otherwords,Rawls finds it possible to imagine a lone individual whose decisions would be valid withoutregardto his or her immediatesocial relationships. Sandel (1982) argues against Rawls that relationshipsprecede and constitute the
person.Relationshipsmake us who we are as individualsand define our interests.Obligations, therefore,are as centralto our identityas rights.For a metacritiqueof Rawls andSandel that analyzes their work in terms of the underlyinguniversalistassumptionsthat they
share,see Bauman1993. There are manydifferentsourcesin the West of a discourseon relationships,not just the communitarianone representedby Callahan,just as thereare many
differentsourcesin Korea.Terms such as relationships,the West, Koreanculture,andethnicitygloss over distinctionsamongvariousepistemologicalandontologicalsources in both
cultureswith regardto definingthe person,morality,andthe body.
3. See Landy 1977 for a generaloverview of the extensive cross-culturalliterature.A
summaryof explanatoryor causal models of illness appearsin Csordas1989. For a particularlyclear example of conflict between biomedicaland traditionalcausal models in an oncology case in Mexico, see Hunt 1993.
4. H. LindemannNelson and J. LindemannNelson (1995) addressthe problemof includingfamilies in medicaldecision makingin mainstreamNorthAmericancontexts. They
discuss a case in which a physicianis stymiedby a conflictbetweenan elderlypatient'sright
to privacy and her adult daughter's right to informationas her mother's caretaker.The
authorssuggest thatthe conflict could be handledbetterif the physicianwere to engage the
motheranddaughterin a conversationaboutmutualobligations:
What's missing from this way of approachingthe issue [i.e., the talk of individual
rights]is any acknowledgmentof the specialclaimspeoplehave on each otherwithina
settingof intimacy... . The relationsamong the people involved can't easily be capturedby talkof rights.Intimatesbelong to each otheras well as to themselves,andthis
NelsonandLindemannNelson 1995:111]
belonginghasmoralconsequences.[Lindemann
5. Accordingto a study published in 1987, only 9 percentof Americanshad written
advancecare directives(Steiber 1987:72, cited in Emanuelet al. 1991:889). As a legislator
introducingthe PSDA in the House of Representativesstated,"Recent surveys show that
only 9 to 15 percentof the populationhave executedadvancedirectives.We believe this low
numberis due, in part,to lack of knowledge"(Levin 1990:E944).
6. Culturalfactors may include not only traditionalbeliefs and values but distrustof
the dominantmedical system due to socioeconomic disparitiesand the experience of discrimination.We hope to addresssuch issues in futurereportsfrom the study.
7. Lynn and Teno (1993) suggest thatthe meaningand usefulness of advancedirectives might be linked to a "middle-class"approachto healthcare. In Kelner's (1995) study
of elderlyCanadianpatients(N = 38), almost all of whom were white Anglo-Saxons, more
PATIENT AUTONOMY AND END-OF-LIFE DECISION MAKING
417
thantwice as manypatients(n = 27) preferredto have a voice in decision makingat the end
of life than to delegate making such decisions (n = 11). Middle-class patientswere more
likely to preferexercisingcontrolat the end of life thanlower-classpatients.
8. Participantswere paid $20 for the survey interviewand $25 for the in-depthethnographicinterview.The ethnographicinterviewswere audiotaped,transcribedverbatiminto
Korean,andtranslatedinto English.A semistructuredinterviewformataddresseda uniform
set of domains across all four ethnic groups (N = 80). All questions were open-endedand
conversational.The resultingqualitativedata include illness narratives,life stories,and responses to hypotheticalscenariosaboutmedicaldecision making.
9. This methodological stance holds that the interviewer's understandingis built
throughthe course of the interviewand that negotiationsof meaningoccur between interviewer andinterviewee.Thatwhich comes first in an interviewprovidesa contextfor the interviewersto elicit for readersto interpretwhatever follows. Excerptsfrom the interview
transcriptarenumberedto facilitatethe reader'ssense of the sequentialdevelopmentof Mrs.
Kim's narrativewithinthe conversation.
10. Hauerwasand Burrell(1989) argue that considerationsof moralcharacteras revealed in life stories are importantto ethical decision making. Mrs. Kim was raised in a
wealthy family butduringher marriagelived in hardtimes. Herhusbandwas a civil servant
when the KoreanWarbrokeout in 1950. He could not get a job for the next 20 years. Mrs.
Kim began to peddle small goods so that she could feed and educateher children.Her life
storyemphasizeswhatshe counts as ethically important:
Since he didn'twork,I thoughtI neededto makea living for my children.I didn'tknow
much and, inexperienced,I startedto sell [changsa]. My work as a peddlerpaid well
enough so thatI could feed andeducatemy children.I did the work for 20 years. ....
I carried goods on my head and sold them. I fed and educated my children in that
way.... My husbanddidn't earn any money at all for 20 years. He didn'thave a job.
At thattime, while peddling,being old fashioned,I didn'treveal my peddlingeitherto
my husbandor to my children.WhereverI encounteredacquaintanceswhile peddling,
I felt more ashamedthanif I were caughtstealing.I madean effortto avoid people.
In peddlingto providenecessities for herchildren,Mrs.Kim's moralactionformorethan20
years is sustainedby her parentalduty (tori). Self-sacrifice is valuedover protectingherself
from shame. Mrs. Kim's moral actions are especially creditablebecause she protectedher
family frombeing directlyconfrontedwith the fact of herpeddling,althoughit is hardto believe thather familyneverfoundout aboutit. The parallelwith nondisclosureof an unfavorable diagnosis is striking:The KoreanAmericanswe interviewedsaid thatpatientswho are
dying often know their diagnosis and prognosis throughinference (nunchi),even though
theirfamilies continueto protectthemfrom learningthe truthdirectly.
11. The MarinAcculturationScale (Marinet al. 1987), which was translatedinto Korean for use with the KoreanAmericansample, measuresthe degree to which individuals
use theirnative languageversusEnglish in daily speaking,thinking,exposureto media,and
socializing with others.
12. Mrs. Kim was interviewedin August 1994. State and federal policies currently
threatento end the entitlementof legal residentslike Mrs. Kim to benefitsincludingSocial
SecurityIncome (SSI) andMedicaid.
13. Some recentdiscussionsof the integrationof qualitativeandquantitativemethods
for clinical researchincludeBrannen1992, Carey 1993, Morse 1991, Stangeet al. 1994, and
Steckleret al. 1992.
14. An overwhelmingmajorityof KoreanAmericans(78%) and MexicanAmericans
(79%)agreedwith the statement"Life sustainingmachinesshould neverbe stoppedeven if
the patientappearsto be dying because there is always the chance of a miracle."In sharp
contrast,only 33 percentof AfricanAmericansand29 percentof EuropeanAmericansconcurredwith this statement.Given a scenarioin which they were a patientin a coma with no
418
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ANTHROPOLOGY
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hope of recovery, very few KoreanAmericans(14%) wanted to be kept alive by CPR, a
findingthatwas indistinguishablefromthatof EuropeanAmericans( 13%).
15. In the MexicanAmericansample,however, assimilationinto the mainstreamEnglish-speakingculturewas associatedwith more positive attitudesabout autonomy,which
was correlatedwith level of educationandincome.
16. There is growing emphasison the importanceof narrativesor stories in clinical
ethics consultation(see GordonandPaci 1997; Hauerwasand Burrell 1989; Hunter1991).
See Kleinman's(1988) argumentthatlisteningto the illness narrativesof patientsshouldbe
a centralfeatureof medicalpractice.
17. The word tori comes fromthe philosophicalandethical conceptof the Tao, or The
Way. It expressesa generalizedprincipleof actingproperlyin humanrelationships.
18. The "Westerndoctors"seen by patientslike Mrs.Kim areoften Koreanphysicians
practicingbiomedicine.
19. Mrs. Kim told a relatedstory,not presentedhere,concerningherconsultationwith
an ophthalmologistabouta growthon her eyelid. In thatsituation,a Korean-speakingnurse
informedMrs.Kim andherdaughter-in-lawthatthe growthon hereye was a cancer.Believing she had a fataldisease,Mrs.Kimbeganto putheraffairsin order.Laterthe symptomdisappearedand the diagnosis of cancer was acknowledgedto be a mistake. Mrs. Kim was
referringalso to this story when she says thatavoiding sufferingis more importantthansatisfying the patient'scuriosity.
20. Mrs. Kim is a practicingBuddhist,and many of her peers are Christian.Religious
differenceswere not significantpredictorsof KoreanAmericanattitudesconcerningpatient
autonomy,however. Mrs. Kim's attitudesreflect syncretismamong Confucian, Buddhist,
and folk or popularbeliefs (e.g., aboutthe role of Fate), as well as lessons drawnfrom her
experiences in America. As Park points out, syncretism is common also among Korean
Americanswho areborn-againChristians:"Theirnew Christianbelief system verifies various aspects of traditionalKoreanculture.Being born again is an ongoing process in which
individualsmakechoices betweenKoreaninfluencesof Confucianism,Buddhism,andshamanism and newly discovered Americanideas representedby born again Christianity"
(1989:287).
21. Koreansin the UnitedStatesarewell awareof statelaws thatlimithow long a body
may be kept and thatmake it impossiblefor themto have traditionalfuneralslastingseveral
days at home.
22. AnotherKoreanAmericaninterviewee(age 79, female) explainedthe reciprocal,
intergenerationalnatureof hyodo (filial piety) by recountinga well-known folktale.It concerns the custom of Koryo-jang(Koryo-stylefuneral),which belongs to the medieval (Koryo) periodof Koreanhistory:
The fundamentalbasis of humanlife is filial piety [hyodo]. Those who adhereto this
value of filial piety always try not to make theirparentsworry, and they follow their
parents'advice well.... Filial piety is the fundamentalbasis of our humanlife. Filial
piety travelsalong the family line. Certainfamilies have devoted childrengeneration
aftergeneration,as the old sayinggoes.. .. You know, thereused to be a customcalled
"Koryofuneral"in Korea a long time ago. "Koryofuneral"is where a young father
carrieshis elderlyfatheron a chikeh[anA-shapedbackframe]to abandonhim deep in
the mountainto his death.Therewas a young fatherwho did that.While he was trudging to the mountainwith his agedfatherin his A-frameon his back,his young son toddled and followed him. Whenhis fatherunloadedhis grandfatherand also abandoned
the A-frame there, the young boy said, "Father,let's also take the A-frame.""What
for?""BecauseI will needit to carryyou hereto abandonyou whenyou areold."Hearing
this, his fatherimmediatelychangedhis mind andtook his fatherbackhome.
As you see in this story,everythinggoes down along the family line. You know, like
father, like son. If you behave well for your parents in front of your children, your
PATIENT AUTONOMY AND END-OF-LIFE DECISION MAKING
419
childrenlearna good example, and, in theirturn,they will do well for you. A tradition
is to be carriedon, you know.
23. Hoshino (1995) reportsa virtuallyidenticalpatternof medical decision making in
Japan.Bowman (1996) found many similaritiesin the end-of-life treatmentpreferencesof
elderlyChinese immigrantsin Canada.See also Kleesing 1992, Mullerand Desmond 1992,
Nilchaikovitet al. 1993, andYeo 1995.
24. The adaptationof Koreanimmigrantshas been reportedin studiesin the following
cities: Los Angeles (Hurhand Kim 1984, Park 1996), Chicago (Kim and Hurh 1993), New
York (Park1989, 1997), San Francisco(Kieferet al. 1985), andToronto(Berryet al. 1987).
25. The U.S. Departmentof HealthandHumanServices Office for Civil Rights designates more than 10 percentof the populationin five states (California,New York, Texas,
New Mexico, and Hawaii)as "LimitedEnglishProficient"(LEP).AsianPacific groupsconcentratedin WashingtonStateandCaliforniacomprise,respectively,43 percentand24 percent of the populationdesignatedas LEPin those states(Woloshinet al. 1995).
26. A parallel to the Korean Americanconcepts of tori and hyodo is presented by
Freedman(1996), who discusses Jewish alternativesto bioethicaldecision makingbased in
individualrights.In particular,the talmudiccategoryof morah,an aspectof filial duty usually translatedin Englishas "fear"butmeaningthe "subjugationof the family member'swill
to theparent,"maybe invokedby peoplewho wanttheirfamiliesto makedecisionsforthem.
27. Similarly,the commission's earlierreportMakingHealth Care Decisions (President's Commission 1982) drawsattentionto family relationships.The introduction,for example, states explicitly that "family memberscan be of great assistance in understanding
informationandmakingdecisions"(1982:5).
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