Cultural Issues in Cultural Issues in Ethical Decision Ethical Decision

MakingMaking

James Hallenbeck, MDJames Hallenbeck, MDAssistant Professor of MedicineAssistant Professor of Medicine

Stanford UniversityStanford UniversityDirector, Palliative Care Services, VA Palo Alto Director, Palliative Care Services, VA Palo Alto

HCSHCS

CONFLICT

Decision making

What is Culture?What is Culture?

CultureCultureMore than EthnicityMore than Ethnicity

More than “Beliefs and More than “Beliefs and Practices”Practices”

EthnicityEthnicity ReligionReligion National OriginNational Origin NationalityNationality Urban/RuralUrban/Rural Socioeconomic Socioeconomic

statusstatus EducationEducation OccupationOccupation Community roleCommunity role

Family roleFamily role GenderGender Sexual orientationSexual orientation Age/generationAge/generation Role in healthcare Role in healthcare Illness role Illness role

CancerCancer HIVHIV Dementia etc.Dementia etc.

Culture – as a Culture – as a VerbVerb

Means of communicationMeans of communication LanguageLanguage ContextualContextual

Non-verbalNon-verbal Spatial/temporalSpatial/temporal

Human relationsHuman relations Trust – mistrustTrust – mistrust Power – PowerlessPower – Powerless

Culture – Culture – Dynamic Dynamic ProcessesProcesses

History/evolutionHistory/evolution Example – Changes in how become ill, Example – Changes in how become ill,

age and die force cultures to change age and die force cultures to change and adaptand adapt

Tensions Tensions within within cultural groupscultural groups

Example Japanese and Example Japanese and Truth-tellingTruth-telling

Stereotype: ‘Japanese do not tell Stereotype: ‘Japanese do not tell patients they are dying. Family patients they are dying. Family makes decisionsmakes decisions

Tension: Japanese often will say, Tension: Japanese often will say, “We Japanese do not tell people that “We Japanese do not tell people that they are dying” However, a majority they are dying” However, a majority will also say they personally would will also say they personally would like to know if they are dying…like to know if they are dying…

The Cultural The Cultural “Representative”“Representative”

Useful in exposing others to perspectives of Useful in exposing others to perspectives of representative grouprepresentative group

ProblemsProblems Representative may or may not be content expertRepresentative may or may not be content expert Risk of stereotyping, despite admonitions to Risk of stereotyping, despite admonitions to

contrarycontrary Emphasis on cultural Emphasis on cultural othersothers – not one’s own – not one’s own

culturescultures Educational focus on attitudes, not more Educational focus on attitudes, not more

generally applicable skillsgenerally applicable skills

Culture of BiomedicineCulture of BiomedicineTensionsTensions

IndividualismIndividualism AutonomyAutonomy Disease in the Disease in the

individualindividual ConsumerismConsumerism

Egalitarianism Egalitarianism Health care as a rightHealth care as a right

Mechanistic/Mechanistic/technologic technologic ReductionistReductionist PaternalisticPaternalistic Bureaucratic Bureaucratic

CapitalismCapitalism Health care as Health care as

commoditycommodityLacking in modern biomedicine

Focus on suffering as object of medicineInclusion of concept of “life-force” in model

Understanding illness as something transcending the individual

““Culture” of Western Culture” of Western BioethicsBioethics

Abstract principlesAbstract principles Individualism Individualism

Rights basedRights based Self-determinationSelf-determination

Egalitarianism – ethics committees Egalitarianism – ethics committees Rules- policies, regulations, laws – Rules- policies, regulations, laws –

esp. United States – part of esp. United States – part of “corporate culture” “corporate culture”

Emphasis on:

Major Principles of Major Principles of Medical EthicsMedical Ethics

Beneficence Nonmaleficence

Autonomy

Justice

Medical Ethics Medical Ethics and Advance and Advance

DirectivesDirectives

Problem How does one act Problem How does one act autonomously, if unable to autonomously, if unable to

make decisions?make decisions?

Answer: others will represent Answer: others will represent wishes using wishes using substituted judgmentsubstituted judgment in a process of in a process of surrogate decision surrogate decision makingmaking

Advance Directives – the Advance Directives – the ProblemProblem

Few Americans filled out advance Few Americans filled out advance directivesdirectives

Doctors didn’t seem to pay much Doctors didn’t seem to pay much attention to themattention to them

Bad things were happening to Bad things were happening to people at the end-of-lifepeople at the end-of-life

The Solution: The Solution: Patient Self-Determination Act Patient Self-Determination Act

of 1990of 1990

Requires health care facilities to Requires health care facilities to raise the issue of advance directives raise the issue of advance directives with patients on admissionwith patients on admission

Big questions:Big questions: How effective were or are advance How effective were or are advance

directives in improving healthcare directives in improving healthcare outcomes?outcomes?

So, how are we doing...

SUPPORT STUDYSUPPORT STUDY 4804 Seriously ill patients4804 Seriously ill patients

569 had Advance Directives (12%)569 had Advance Directives (12%) 36 contained special instructions36 contained special instructions

22 of these had recommendations to forgo treatment as 22 of these had recommendations to forgo treatment as applied to the patient’s actual situationapplied to the patient’s actual situation

In only of these 9 casesIn only of these 9 cases was care was care consistent with specific instructionsconsistent with specific instructions

Teno, J Am Geriatr Soc, 1997

Advance Directives –not Advance Directives –not bad, but…bad, but…

Argument for use and Argument for use and implementation not implementation not anthropologically basedanthropologically based

May not be as important as May not be as important as advocates thought as a vehicle to advocates thought as a vehicle to improved healthcare outcomesimproved healthcare outcomes System issues now appear more System issues now appear more

importantimportant

Lynn, J., et al., Rethinking fundamental assumptions: SUPPORT's implications for future reform. Study to Understand Prognoses and Preferences and Risks of Treatment. J Am Geriatr Soc, 2000. 48(5 Suppl): p. S214-21.

““Pseudo-ethics”Pseudo-ethics”Conflicting ethics not Conflicting ethics not always the underlying always the underlying

cause of disagreementscause of disagreements

Misunderstandings and Misunderstandings and miscommunicationmiscommunication

History – Lack of trustHistory – Lack of trust Knowledge deficitsKnowledge deficits Lack of competencies /skillsLack of competencies /skills Lack of options or knowledge of Lack of options or knowledge of

optionsoptions

Example: Truth-tellingExample: Truth-telling

A Narrowly Defined Ethical A Narrowly Defined Ethical DilemmaDilemma

Importance of autonomyImportance of autonomy The patient has “a right to know”The patient has “a right to know” Pending decision (chemotherapy, Pending decision (chemotherapy,

DNR, hospice referral) requires DNR, hospice referral) requires informed consentinformed consent

Ethics Ethics Consult!Consult!

Dealing with Issues of Dealing with Issues of Truth TellingTruth Telling

Statement of respectStatement of respect Why has this request been made?Why has this request been made? Where does the patient stand?Where does the patient stand? Statement of own valuesStatement of own values Prepare/permission to negotiatePrepare/permission to negotiate Set ground rulesSet ground rules Talk with patientTalk with patient

To defer one’s autonomy can To defer one’s autonomy can be an act of autonomybe an act of autonomy

Explanatory Model Explanatory Model QuestionsQuestions

WhatWhat Do you call the problem?Do you call the problem? Do you think the sickness does?Do you think the sickness does? Do you think the natural course of the Do you think the natural course of the

illness is?illness is? Is it you hope for/fear?Is it you hope for/fear?

WhyWhy Do you believe this problem occurred?Do you believe this problem occurred?

What, Why, How, WhoWhat, Why, How, Whocontinued...continued...

HowHow Do you think the illness should be Do you think the illness should be

treated?treated? WhoWho

Should one turn to for help?Should one turn to for help? Should be involved in care and decision Should be involved in care and decision

making?making?Kleinman, A., Kleinman, A., Culture, illness and Culture, illness and cure: clinical lessons from cure: clinical lessons from

anthropologic and cross-cultural anthropologic and cross-cultural research.research. Annals of Internal Annals of Internal

Medicine, 1978. 88Medicine, 1978. 88: p. 251-258.: p. 251-258.

SummarySummary

Ethics Ethics areare important, but cannot exist in important, but cannot exist in a vacuuma vacuum

Approaching all disputes as Approaching all disputes as representing ethical dilemmas reflects a representing ethical dilemmas reflects a Western cultural biasWestern cultural bias

Culture permeates everything we doCulture permeates everything we do Most difficult is appreciating our own Most difficult is appreciating our own

cultural biasescultural biases Skill training, especially in cross-Skill training, especially in cross-

cultural communication can go a long cultural communication can go a long ways in resolving disputes peacefullyways in resolving disputes peacefully