Cross-cultural aspects of communication with cancer patients

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Cross-cultural aspects of communication with
cancer patients

• Antonella Surbone, MD PhD FACP
• Professor of Medicine
• New York University

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Culture definition

• Culture is the sum of the integrated patterns
  of knowledge, beliefs and behaviours of a given
  community.
• Members share thoughts, communication styles,
  ways of interacting, views of roles and
  relationships, values, practices, customs.
• Culture provides us with a web of significance

Olweny 1994 Swendson Windsor, 1996
Kagawa-Singer 2003
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Culture contributing factors

• age
• religion
• gender
• sexual orientation
• occupation
• disability

• race and ethnicity
• geographic boundaries
• socioeconomic status
• educational level
• spoken language
• urban or rural contexts

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Culture and illness

• Culture provides us with a framework for
  interpreting and relating to the external world
• Culture acts as a facilitator at times of trial,
  when we rely on our sense of self and of
  connectedness
• Making sense of the suffering, loss of control
  and of many uncertainties that accompany their
  illness is essential to cancer patients

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Cross-cultural differences, health and illness

• perceptions of disease, disability and suffering
• degrees and expressions of concerns
• responses to treatment
• styles of relationships to individual
  professionals
• approaches to institutions and health care
  systems
• locus of decision-making

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Cross-cultural differences, health and illness

• attitudes toward
• degrees and modalities of information
• prevention and screening
• research and clinical trial
• end-of-life decisions

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Cultural differences the quandary of diversity
pluralism

• Can there be mutual understanding in spite of
  diversity?
• Is cultural relativism an ethical justification?
• Are there universal human values beyond
  culturally variable norms?

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Cultural differences the quandary of diversity
pluralism

• Cultural pluralism does NOT necessarily lead to
• ethical relativism ? pessimism ? skepticism
• Cultural pluralism adds to our common moral
  values
• an historical perspective
• a concrete contextual dimension

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The art of caring
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Role of culture in oncology

• Cultural values and attitudes influence
  patients preferences and decisions regarding
• truth telling, information and communication
• locus of decision-making
• prevention and screening
• involvement in clinical trials
• end of life choices

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Culture and communication in oncology

• Cross-cultural encounters are increasing
• Bedside misunderstandings and ethical dilemmas
  often arise from miscommunication that generates
  mistrust
• Cultural factors affect disparities in access to
  cancer care research for minority and
  underprivileged patients.

Kagawa-Singer Blackhall, JAMA
2001 Betancourt, Acad Med 2003
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Culture and communication in oncology

• Cultural identity is no longer identified with
  ethnic or geographic boundaries
• We all belong simultaneously to multiple cultures
• Medicine is a culture
• Culture is involved in every patient-doctor
  relationship

Surbone Lowenstein, J Clin Ethics 2003,
Surbone, Ann Oncol 2004
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Cultural differences the patient-doctor
relationship and trust

• Cultural differences add to the complexity of the
  asymmetric relation between cancer patients and
  oncologists by potentially
• raising barriers that enhance the asymmetry of
  power
• impeding full participation of patients and
  families
• slowing or hindering effective communication
• engendering mistrust

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Cultural differences the patient-doctor
relationship and trust

• Cultural biases, streotyping and prejudices may
  exist at the level of patient, professionals and
  systems
• They result from
• discriminatory attitudes practices within
  systems (almost invariably)
• professional burnout due to difficulties in
  cross-cultural communication (frequently)
• conscious intentional racism (rarely)

Crawley, Kagawa Singer, Rutman. California Health
Care Foundation, 2007
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Cross-cultural aspects of communication

• CULTURAL DIFFERENCES
• IN COMMUNICATION

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Communication through language

• In the Shona language, there is no word for
  cancer.
• Cancer is believed to be a ghost.

Levy M, NYAS 1997
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Metaphors
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Metaphors

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Metaphors
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Evolution of communication with cancer patients
wordwide

• picture SCC

Truth-telling about diagnosis is now common
practice Persisting partial disclosure about
diagnosis Persisting non disclosure
about prognosis and risks
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Evolution of communication
with cancer patients wordwide
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Evolution of communication with cancer patients
wordwide

• Communication preferences and needs of cancer
  patients similar
• Communication needs vary over time and according
  to illness stage
• Informed patients show higher compliance and
  satisfaction
• Informed patients value
• Content (accuracy, completeness)
• Facilitative aspects (settings)
• Supportive aspects (psychological and emotional)

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Evolution of communication with cancer patients
wordwide
Inevitable bias?
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Evolution of communication with cancer patients
wordwide

• Truth-telling variations worldwide according with
  
• age
• gender
• educational level
• geographic location
• treating institutions
• Southern Italian patients know that they have
  cancer, yet some refuse to write cancer on the
  questionnaires

Bracci et al, 2008
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Evolution of communication with cancer patients
wordwide
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Evolution of communication with cancer patients

• Southern Italian patients are better informed
  about their treatment than other aspects
• Patients in denial, holding unrealistic hopes
• ? focus selectively on treatment-related
  information
• Physicians reluctant to communicate
• ? focus on discussion of treatment options
• ? hide behind neutral statistical
  information

Bracci et al, 2008
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Culture and ethical norms

• Culture influences ethical norms in clinical
  practice.
• Principles of autonomy and beneficence are
  correlated, rather than conflicting
• Individual autonomy highly valued in western
  cultures

Pellegrino ED, JAMA 1992 Surbone A, JAMA 1992
Lancet Oncol 2006
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Culture and ethical norms
In many cultures, autonomy perceived by
cancer patients as synonymous with isolation,
not with empowerment
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Cross-cultural communication what is the truth?

• Truth is not
• A static object
• A neutral object
• Something we tell
• Something we impose

• Truth is
• A dynamic reality
• A value-laden entity
• Something we make
• Something we share

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Illness multiple dimensions objective subject
ive interpersonal and relational
socio-cultural These evolve with time,under
the influence of interactions between
patient and physician family and social
context pharmacological variables environmental
factors
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Cross-cultural aspects of communication

• PERSISTING EMERGING ISSUES

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Cross-cultural communication persisting
emerging issues

• Discussion of
• prognosis
• family involvement in communication
• advanced directives
• imminent death
• medical errors

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Cross-cultural communication discussing
prognosis
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Cross-cultural aspects of communication

• CULTURAL DIFFERENCES
• AND FAMILY INVOLVEMENT

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Courtesy of Prof. Lea Baider, PhD
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Culture and family involvement

• Cancer is an illness of the entire family
• The process of healing and caring for cancer
  patients depends on the reciprocal interactions
  of patients, family caregivers and oncology
  professionals within a functional system.

Baider L, Cooper CL, De-Nour K. (Eds)
Cancer and the Family. 2000
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Culture and family involvement
communication decision-making end-of-life
matters care-giving
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Cross-cultural communication family requests to
withhold information
57 of 122 MDs, 1 or gt family requests (Middle-Ea
ster, Hispanic, Caucasian, African-American,
Asian/Pacific Islanders) MDs abided
occasionally 37 never
36 always 1.5 Patient family
cultural norms Patients emotional
state Patients expressed wishes Concerns about
destroying hope Family expressed wishes More MDs
willing to withhold prognosis
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Culture and family involvement lessons for the
clinic

• Do not stereotype families patterns of reaction
  to cancer of a relative based on cultural/ethnic
  background
• Assess and identify families at risk of
  particular distress and dysfunction, that may
  need counseling
• Understand and negotiate the concerns of family
  members, while fostering patients autonomy

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Culture and family involvement lessons for the
clinic

• Address the distinct informational needs of
  patients and their families
• Provide professional guidance and support to
  families faced with difficult decisions
• Consider difficult role of family members as
  translators, in view of family dynamics and
  possible conflicts

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Cultural differences and role of family
translators

• Elderly family members
• Kids and teenagers
• Members with conflicting issues or different
  goals
• Members with different degrees of acculturation

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Cross-cultural aspects of communication

• CULTURAL COMPETENCE

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Cultural competence and health disparities

• Patient-centered care and cultural competence
  training are means of improving the quality of
  health care for all and eliminating racial
  ethnic disparities in health care.

Institute of Medicine (IOM)
Crossing the Quality Chasm Unequal Treatment
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Cultural concordance or cultural competence?

• Cultural concordance between patient and
  physician or nurse may
• increase satisfaction
• improve communication
• avoid bedside misunderstandings
• decrease unequal treatment
• Cultural competence allows all of us to deliver
  optimal cancer cancer to all our patients

Surbone Kagawa-Singer , in
press 2009
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The art of caring
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Ten tips for oncology professionals

• Do not make assumptions based on race,
  nationality, language, age, gender, educational
  level and SES
• Ask patients to briefly describe their cultural
  and religious background
• When appropriate, acknowledge your own background

Surbone A, Supp Care Cancer 2003

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Ten tips for oncology professionals

• Ask patients to what type of family do they
  belong (nuclear or extended) and in whom do they
  confide
• Ask patient what language they speak at home
• Offer professional translation, remembering to
  consider the translator as a cultural mediator
• Double check to assure the translation of a
  relative or friend is correct and covers all
  relevant information

Surbone A, Supp Care Cancer 2003
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Ten tips for oncology professionals

• Never assume that patients do not wish to receive
  information, discuss prognosis death, or
  undergo treatments
• Ask patients how informed do they wish to be,
  while clarifying ethics laws of the country
  where they are treated
• Ask patients for their understanding of the
  illness and for they changing communication needs
  preferences over time

Surbone A, Supp Care Cancer 2003
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Thanks to all my patients for teaching me about
their wonderful cultures.Thank you for your
attention!