Cross-cultural aspects of communication with cancer patients Antonella Surbone, MD PhD FACP...

Cross-cultural aspects Cross-cultural aspects of communication of communication

with cancer patientswith cancer patients

Antonella Surbone, MD PhD FACPAntonella Surbone, MD PhD FACP

Professor of MedicineProfessor of Medicine

New York UniversityNew York University

A. Surbone MD PhD, New York University

Culture: definitionCulture: definition

Culture is the sum of theCulture is the sum of the integrated patterns of integrated patterns of knowledge, beliefs and behavioursknowledge, beliefs and behaviours of a given of a given

community. community.

Members shareMembers share thoughts, communication styles, ways of thoughts, communication styles, ways of interacting, views of roles and relationships, values, interacting, views of roles and relationships, values,

practices, customs.practices, customs.

Culture provides us with aCulture provides us with a web of significanceweb of significance

Olweny 1994; Swendson & Windsor, 1996Swendson & Windsor, 1996; Kagawa-Singer 2003


Culture: contributing factorsCulture: contributing factors

race and ethnicityrace and ethnicity geographic boundariesgeographic boundaries socioeconomic statussocioeconomic status educational leveleducational level spoken languagespoken language urban or rural contextsurban or rural contexts

ageage religionreligion gendergender sexual orientationsexual orientation occupationoccupation disability disability


Culture and illnessCulture and illness

Culture provides us with a framework for interpreting and Culture provides us with a framework for interpreting and relating to the external worldrelating to the external world

Culture acts as a facilitator at times of trial, when we rely Culture acts as a facilitator at times of trial, when we rely on our sense of self and of connectednesson our sense of self and of connectedness

Making sense of the suffering, loss of control and of many Making sense of the suffering, loss of control and of many uncertainties that accompany their illness is essential to uncertainties that accompany their illness is essential to

cancer patientscancer patients


Cross-cultural differences, health Cross-cultural differences, health and illnessand illness

perceptionsperceptions of disease, disability and suffering of disease, disability and suffering degreesdegrees and and expressionsexpressions of concernsof concerns responses responses to treatmentto treatment stylesstyles of relationships to individual professionals of relationships to individual professionals approachesapproaches to institutions and health care systems to institutions and health care systems locuslocus of decision-making of decision-making


Cross-cultural differences, health Cross-cultural differences, health and illnessand illness

attitudesattitudes toward toward

degrees and modalities of informationdegrees and modalities of information prevention and screeningprevention and screening research and clinical trialresearch and clinical trial end-of-life decisionsend-of-life decisions



Cultural differences: Cultural differences: the quandary of diversity & the quandary of diversity &

pluralismpluralism

Can there be mutual understanding in spite of diversity?Can there be mutual understanding in spite of diversity?

Is cultural relativism an ethical justification?Is cultural relativism an ethical justification?

Are there universal human values beyond culturally Are there universal human values beyond culturally variable norms?variable norms?


Cultural differences: Cultural differences: the quandary of diversity & the quandary of diversity &

pluralismpluralism

Cultural pluralism does NOT necessarily lead toCultural pluralism does NOT necessarily lead to

ethical relativism ethical relativism pessimism pessimism skepticismskepticism

Cultural pluralism adds to our common moral values Cultural pluralism adds to our common moral values

an an historical perspectivehistorical perspective a a concrete contextual dimensionconcrete contextual dimension


The art of caring

Antonella


Role of culture in oncologyRole of culture in oncology

Cultural values and attitudes Cultural values and attitudes influence influence patients’ patients’ preferences preferences and and decisionsdecisions regarding: regarding:

truth telling, information and communicationtruth telling, information and communication locus of decision-makinglocus of decision-making prevention and screening prevention and screening involvement in clinical trialsinvolvement in clinical trials end of life choicesend of life choices


Culture and communication in Culture and communication in oncologyoncology

Cross-cultural encounters are increasingCross-cultural encounters are increasing

Bedside misunderstandings and ethical dilemmas often Bedside misunderstandings and ethical dilemmas often arise from miscommunication that generates mistrustarise from miscommunication that generates mistrust

Cultural factors affect disparities in access to cancer Cultural factors affect disparities in access to cancer care & research for minority and underprivileged care & research for minority and underprivileged patients.patients.

Kagawa-Singer & Blackhall, JAMA 2001Betancourt, Acad Med 2003


Culture and communication in Culture and communication in oncologyoncology

Cultural identity is no longer identified with ethnic or Cultural identity is no longer identified with ethnic or geographic boundariesgeographic boundaries

We all belong simultaneously to multiple culturesWe all belong simultaneously to multiple cultures

Medicine is a cultureMedicine is a culture

Culture is involved in every patient-doctor relationshipCulture is involved in every patient-doctor relationship

Surbone & Lowenstein, J Clin Ethics 2003, Surbone, Ann Oncol 2004


Cultural differences:Cultural differences: the patient-doctor relationship the patient-doctor relationship

and trustand trust

Cultural differences add to the complexity of the Cultural differences add to the complexity of the asymmetric relation between cancer patients and asymmetric relation between cancer patients and oncologists by potentiallyoncologists by potentially

raising barriers that enhance the asymmetry of power raising barriers that enhance the asymmetry of power impeding full participation of patients and families impeding full participation of patients and families slowing or hindering effective communicationslowing or hindering effective communication engendering mistrust engendering mistrust


Cultural differences: Cultural differences: the patient-doctor relationship the patient-doctor relationship

and trustand trust

Cultural biases, streotyping and prejudices may exist at Cultural biases, streotyping and prejudices may exist at the level of patient, professionals and systemsthe level of patient, professionals and systems

They result from They result from discriminatory attitudes & practices within systems (almost discriminatory attitudes & practices within systems (almost

invariably) invariably) professional burnout due to difficulties in cross-cultural professional burnout due to difficulties in cross-cultural

communication (frequently)communication (frequently) conscious intentional racism (rarely)conscious intentional racism (rarely)

Crawley, Kagawa Singer, Rutman. California Health Care Foundation, 2007

Cross-cultural aspects Cross-cultural aspects of communicationof communication

CULTURAL DIFFERENCESCULTURAL DIFFERENCES

IN COMMUNICATIONIN COMMUNICATION



Communication through languageCommunication through language

In the Shona language, there is no word for In the Shona language, there is no word for “cancer.” “cancer.”

Cancer is believed to be a “ghost.”Cancer is believed to be a “ghost.”

Levy M, NYAS 1997


Metaphors


Metaphors


Metaphors


Evolution of communication Evolution of communication with cancer patients wordwidewith cancer patients wordwide

picture SCCpicture SCC Truth-telling about Truth-telling about diagnosis isdiagnosis isnow common practicenow common practice

Persisting partial Persisting partial disclosure about disclosure about diagnosisdiagnosis

Persisting non Persisting non disclosure aboutdisclosure aboutprognosis and risksprognosis and risks


Evolution of Evolution of communication communication with cancer patients with cancer patients wordwidewordwide



Communication preferences and needs of cancer patients similarCommunication preferences and needs of cancer patients similar

Communication needs vary over time and according to illness stageCommunication needs vary over time and according to illness stage

Informed patients show higher compliance and satisfactionInformed patients show higher compliance and satisfaction

Informed patients value: Informed patients value: Content (accuracy, completeness)Content (accuracy, completeness) Facilitative aspects (settings)Facilitative aspects (settings) Supportive aspects (psychological and emotional) Supportive aspects (psychological and emotional)



Inevitable bias?



Truth-telling variations worldwide according with Truth-telling variations worldwide according with ageage gendergender educational leveleducational level geographic locationgeographic location treating institutionstreating institutions

Southern Italian patients know that they have cancer, yet some Southern Italian patients know that they have cancer, yet some

refuse to write “cancer” on the questionnairesrefuse to write “cancer” on the questionnaires Bracci et al, 2008




Evolution of communication with Evolution of communication with cancer patientscancer patients

Southern Italian patients are better informed about their treatment than Southern Italian patients are better informed about their treatment than other aspectsother aspects

PatientsPatients in denial, holding unrealistic hopes in denial, holding unrealistic hopes focus selectively on treatment-related focus selectively on treatment-related

informationinformation

PhysiciansPhysicians reluctant to communicate reluctant to communicate focus on discussion of treatment optionsfocus on discussion of treatment options

hide behind “neutral” statistical informationhide behind “neutral” statistical information

Bracci et al, 2008


Culture and ethical normsCulture and ethical norms

CultureCulture influences ethical norms in clinical practice. influences ethical norms in clinical practice.

Principles ofPrinciples of autonomy and beneficenceautonomy and beneficence are correlated, are correlated, rather than conflictingrather than conflicting

Individual autonomyIndividual autonomy highly valued in western cultures highly valued in western cultures

Pellegrino ED, JAMA 1992; Surbone A, JAMA 1992 & Lancet Oncol 2006


In many cultures,In many cultures, autonomy autonomy perceived by cancerperceived by cancerpatients as synonymous patients as synonymous with with isolation, isolation, not with not with empowermentempowerment

Culture and ethical normsCulture and ethical norms


Cross-cultural communication: Cross-cultural communication: what is the truth? what is the truth?

Truth is notTruth is not

A static objectA static object A neutral objectA neutral object Something we tellSomething we tell Something we imposeSomething we impose

Truth isTruth is

A dynamic realityA dynamic reality A value-laden entityA value-laden entity Something we makeSomething we make Something we shareSomething we share


Illness’ multiple dimensions:

objectivesubjectiveinterpersonal and relational socio-cultural

These evolve with time,under the influence of interactions between :

patient and physicianfamily and social contextpharmacological variablesenvironmental factors


PERSISTING & PERSISTING & EMERGING ISSUES EMERGING ISSUES


Cross-cultural communication: Cross-cultural communication: persisting & emerging issuespersisting & emerging issues

Discussion of Discussion of prognosisprognosis family involvement in communicationfamily involvement in communication advanced directivesadvanced directives imminent deathimminent death medical errorsmedical errors


Cross-cultural communication: Cross-cultural communication: discussing prognosisdiscussing prognosis


CULTURAL DIFFERENCESCULTURAL DIFFERENCES

AND FAMILY AND FAMILY INVOLVEMENTINVOLVEMENT


Courtesy of Prof. Lea Baider, PhD

Concerns of Family Members

• How much should the patient be “pushed” to be independent?

• Which distress and disabilities

within the family are relatedto the diseaseand which are not?

Family Communication: Meaning

• Illness means to share and to negotiate.

• The family’s collective perceptionscould shape the meaningof the illness for each family member.


Culture and family involvementCulture and family involvement

Cancer is an illness of the entire Cancer is an illness of the entire familyfamily

The process of healing and caring for The process of healing and caring for cancer patients depends on the cancer patients depends on the

reciprocal interactionsreciprocal interactions of patients, of patients, family caregivers and oncology family caregivers and oncology

professionals within a professionals within a functional functional systemsystem. .

Baider L, Cooper CL, De-Nour K. (Eds) “Cancer and the Family.” 2000


Culture and family involvementCulture and family involvement

*communication *communication *decision-making *decision-making *end-of-life matters*end-of-life matters*care-giving *care-giving


Cross-cultural communication: Cross-cultural communication: family requests to withhold family requests to withhold

informationinformation57% of 122 MDs, 1 or > family requests(Middle-Easter, Hispanic, Caucasian, African-American, Asian/Pacific Islanders)

MDs abided: occasionally 37% never 36% always 1.5%

Patient & family cultural norms Patients’ emotional statePatients’ expressed wishesConcerns about destroying hopeFamily expressed wishes

More MDs willing to withhold prognosis


Culture and family involvement: Culture and family involvement: lessons for the cliniclessons for the clinic

Do not stereotype families’ patterns of reaction to cancer Do not stereotype families’ patterns of reaction to cancer of a relative based on cultural/ethnic backgroundof a relative based on cultural/ethnic background

Assess and identify families at risk of particular distress Assess and identify families at risk of particular distress and dysfunction, that may need counseling and dysfunction, that may need counseling

Understand and negotiate the concerns of family Understand and negotiate the concerns of family members, while fostering patients’ autonomymembers, while fostering patients’ autonomy


Culture and family involvement: Culture and family involvement: lessons for the cliniclessons for the clinic

Address the distinct informational needs of patients and Address the distinct informational needs of patients and their families their families

Provide professional guidance and support to families Provide professional guidance and support to families faced with difficult decisionsfaced with difficult decisions

Consider difficult role of family members as translators, Consider difficult role of family members as translators, in view of family dynamics and possible conflictsin view of family dynamics and possible conflicts


Cultural differences and role of Cultural differences and role of family translatorsfamily translators

Elderly family membersElderly family members Kids and teenagersKids and teenagers Members with conflicting issues or different goalsMembers with conflicting issues or different goals Members with different degrees of acculturationMembers with different degrees of acculturation


CULTURAL COMPETENCECULTURAL COMPETENCE


Cultural competence and health Cultural competence and health

disparitiesdisparities

Patient-centered care and cultural competence training are Patient-centered care and cultural competence training are means of improving the quality of health care for all and means of improving the quality of health care for all and

eliminating racial & ethnic disparities in health care. eliminating racial & ethnic disparities in health care.

Institute of Medicine (IOM) Crossing the Quality Chasm & Unequal Treatment


Cultural concordance or cultural Cultural concordance or cultural

competence?competence? Cultural concordance between patient and physician or nurse mayCultural concordance between patient and physician or nurse may

increase satisfactionincrease satisfaction improve communicationimprove communication avoid bedside misunderstandingsavoid bedside misunderstandings decrease unequal treatmentdecrease unequal treatment

Cultural competence allows all of us to deliver optimal cancer Cultural competence allows all of us to deliver optimal cancer

cancer to all our patientscancer to all our patients

Surbone & Kagawa-Singer , in press 2009

The art of caring


Ten tips for oncology professionalsTen tips for oncology professionals

Do not make assumptions based on race, nationality, language, Do not make assumptions based on race, nationality, language, age, gender, educational level and SESage, gender, educational level and SES

Ask patients to briefly describe their cultural and religious Ask patients to briefly describe their cultural and religious backgroundbackground

When appropriate, acknowledge your own backgroundWhen appropriate, acknowledge your own background

Surbone A, Supp Care Cancer 2003



Ask patients to what type of family do they belong (nuclear or Ask patients to what type of family do they belong (nuclear or extended) and in whom do they confideextended) and in whom do they confide

Ask patient what language they speak at homeAsk patient what language they speak at home

Offer professional translation, remembering to consider the Offer professional translation, remembering to consider the translator as a “cultural mediator”translator as a “cultural mediator”

Double check to assure the translation of a relative or friend is Double check to assure the translation of a relative or friend is correct and covers all relevant informationcorrect and covers all relevant information




Never assume that patients do not wish to receive information, Never assume that patients do not wish to receive information, discuss prognosis & death, or undergo treatmentsdiscuss prognosis & death, or undergo treatments

Ask patients how informed do they wish to be, while clarifying ethics Ask patients how informed do they wish to be, while clarifying ethics & laws of the country where they are treated& laws of the country where they are treated

Ask patients for their understanding of the illness and for they Ask patients for their understanding of the illness and for they changing communication needs & preferences over timechanging communication needs & preferences over time



Thanks to all my patients for Thanks to all my patients for teaching me about their wonderful teaching me about their wonderful

cultures.cultures.Thank you for your attention!Thank you for your attention!

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