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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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Presentation on theme: "Cross-cultural aspects of communication with cancer patients Antonella Surbone, MD PhD FACP Professor of Medicine New York University."— Presentation transcript:

1 Cross-cultural aspects of communication with cancer patients Antonella Surbone, MD PhD FACP Professor of Medicine New York University

2 A. Surbone MD PhD, New York University Culture: definition Culture is the sum of the integrated patterns of knowledge, beliefs and behaviours of a given community. 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 Swendson & Windsor, 1996 Olweny 1994; Swendson & Windsor, 1996; Kagawa-Singer 2003

3 A. Surbone MD PhD, New York University Culture: contributing factors race and ethnicity race and ethnicity geographic boundaries geographic boundaries socioeconomic status socioeconomic status educational level educational level spoken language spoken language urban or rural contexts urban or rural contexts age religion gender sexual orientation occupation disability

4 A. Surbone MD PhD, New York University Culture and illness Culture provides us with a framework for interpreting and relating to the external world 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 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

5 A. Surbone MD PhD, New York University Cross-cultural differences, health and illness perceptions of disease, disability and suffering perceptions of disease, disability and suffering degrees and expressions of concerns degrees and expressions of concerns responses to treatment responses to treatment styles of relationships to individual professionals styles of relationships to individual professionals approaches to institutions and health care systems approaches to institutions and health care systems locus of decision-making locus of decision-making

6 A. Surbone MD PhD, New York University Cross-cultural differences, health and illness attitudes toward attitudes toward degrees and modalities of information degrees and modalities of information prevention and screening prevention and screening research and clinical trial research and clinical trial end-of-life decisions end-of-life decisions

7 A. Surbone MD PhD, New York University

8 Cultural differences: the quandary of diversity & pluralism 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 variable norms? Are there universal human values beyond culturally variable norms?

9 A. Surbone MD PhD, New York University Cultural differences: the quandary of diversity & pluralism Cultural pluralism does NOT necessarily lead to Cultural pluralism does NOT necessarily lead to ethical relativism  pessimism  skepticism Cultural pluralism adds to our common moral values Cultural pluralism adds to our common moral values an historical perspective an historical perspective a concrete contextual dimension a concrete contextual dimension

10 A. Surbone MD PhD, New York University The art of caring

11 A. Surbone MD PhD, New York University Role of culture in oncology Cultural values and attitudes influence patients’ preferences and decisions regarding: truth telling, information and communication truth telling, information and communication locus of decision-making locus of decision-making prevention and screening prevention and screening involvement in clinical trials involvement in clinical trials end of life choices end of life choices

12 A. Surbone MD PhD, New York University Culture and communication in oncology Cross-cultural encounters are increasing Cross-cultural encounters are increasing Bedside misunderstandings and ethical dilemmas often arise from miscommunication that generates mistrust 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. Cultural factors affect disparities in access to cancer care & research for minority and underprivileged patients. Kagawa-Singer & Blackhall, JAMA 2001 Betancourt, Acad Med 2003

13 A. Surbone MD PhD, New York University Culture and communication in oncology Cultural identity is no longer identified with ethnic or geographic boundaries Cultural identity is no longer identified with ethnic or geographic boundaries We all belong simultaneously to multiple cultures We all belong simultaneously to multiple cultures Medicine is a culture Medicine is a culture Culture is involved in every patient-doctor relationship Culture is involved in every patient-doctor relationship Surbone & Lowenstein, J Clin Ethics 2003, Surbone, Ann Oncol 2004

14 A. Surbone MD PhD, New York University 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 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 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 communication slowing or hindering effective communication engendering mistrust engendering mistrust

15 A. Surbone MD PhD, New York University Cultural differences: the patient-doctor relationship and trust Cultural biases, streotyping and prejudices may exist at the level of patient, professionals and systems Cultural biases, streotyping and prejudices may exist at the level of patient, professionals and systems They result from They result from discriminatory attitudes & practices within systems (almost invariably) discriminatory attitudes & practices within systems (almost invariably) professional burnout due to difficulties in cross-cultural communication (frequently) professional burnout due to difficulties in cross-cultural communication (frequently) conscious intentional racism (rarely) conscious intentional racism (rarely) Crawley, Kagawa Singer, Rutman. California Health Care Foundation, 2007

16 Cross-cultural aspects of communication CULTURAL DIFFERENCES IN COMMUNICATION

17 A. Surbone MD PhD, New York University

18 Communication through language In the Shona language, there is no word for “cancer.” Cancer is believed to be a “ghost.” Levy M, NYAS 1997

19 A. Surbone MD PhD, New York University Metaphors

20 A. Surbone MD PhD, New York University Metaphors

21 A. Surbone MD PhD, New York University Metaphors

22 A. Surbone MD PhD, New York University Evolution of communication with cancer patients wordwide picture SCC picture SCC Truth-telling about diagnosis is now common practice Persisting partial disclosure about diagnosis Persisting non disclosure about prognosis and risks

23 A. Surbone MD PhD, New York University Evolution of communication Evolution of communication with cancer patients wordwide with cancer patients wordwide

24 A. Surbone MD PhD, New York University Evolution of communication with cancer patients wordwide Communication preferences and needs of cancer patients similar Communication preferences and needs of cancer patients similar Communication needs vary over time and according to illness stage Communication needs vary over time and according to illness stage Informed patients show higher compliance and satisfaction Informed 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)

25 A. Surbone MD PhD, New York University Evolution of communication with cancer patients wordwide Inevitable bias?

26 A. Surbone MD PhD, New York University Evolution of communication with cancer patients wordwide Truth-telling variations worldwide according with Truth-telling variations worldwide according with age age gender gender educational level educational level geographic location geographic location treating institutions treating institutions Southern Italian patients know that they have cancer, yet some refuse to write “cancer” on the questionnaires Bracci et al, 2008

27 A. Surbone MD PhD, New York University Evolution of communication with cancer patients wordwide

28 A. Surbone MD PhD, New York University Evolution of communication with cancer patients Southern Italian patients are better informed about their treatment than other aspects Patients in denial, holding unrealistic hopes Patients in denial, holding unrealistic hopes  focus selectively on treatment-related information  focus selectively on treatment-related information Physicians reluctant to communicate Physicians reluctant to communicate  focus on discussion of treatment options  hide behind “neutral” statistical information  hide behind “neutral” statistical information Bracci et al, 2008

29 A. Surbone MD PhD, New York University Culture and ethical norms Culture influences ethical norms in clinical practice. Culture influences ethical norms in clinical practice. Principles of autonomy and beneficence are correlated, rather than conflicting Principles of autonomy and beneficence are correlated, rather than conflicting Individual autonomy highly valued in western cultures Individual autonomy highly valued in western cultures Pellegrino ED, JAMA 1992; Surbone A, JAMA 1992 & Lancet Oncol 2006

30 A. Surbone MD PhD, New York University In many cultures, autonomy perceived by cancer patients as synonymous withisolation, not with empowerment Culture and ethical norms

31 A. Surbone MD PhD, New York University Cross-cultural communication: what is the truth? Truth is not Truth is not A static object A static object A neutral object A neutral object Something we tell Something we tell Something we impose Something we impose Truth is A dynamic reality A value-laden entity Something we make Something we share

32 A. Surbone MD PhD, New York University Illness’ multiple dimensions: objective subjective 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

33 Cross-cultural aspects of communication PERSISTING & EMERGING ISSUES

34 A. Surbone MD PhD, New York University Cross-cultural communication: persisting & emerging issues Discussion of Discussion of prognosis prognosis family involvement in communication family involvement in communication advanced directives advanced directives imminent death imminent death medical errors medical errors

35 A. Surbone MD PhD, New York University Cross-cultural communication: discussing prognosis

36 Cross-cultural aspects of communication CULTURAL DIFFERENCES AND FAMILY INVOLVEMENT

37 A. Surbone MD PhD, New York University Courtesy of Prof. Lea Baider, PhD

38 A. Surbone MD PhD, New York University Culture and family involvement Cancer is an illness of the entire family 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

39 A. Surbone MD PhD, New York University Culture and family involvement *communication*decision-making *end-of-life matters *care-giving

40 A. Surbone MD PhD, New York University Cross-cultural communication: family requests to withhold information 57% 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 state Patients’ expressed wishes Concerns about destroying hope Family expressed wishes More MDs willing to withhold prognosis

41 A. Surbone MD PhD, New York University 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 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 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 Understand and negotiate the concerns of family members, while fostering patients’ autonomy

42 A. Surbone MD PhD, New York University Culture and family involvement: lessons for the clinic Address the distinct informational needs of patients and their families Address the distinct informational needs of patients and their families Provide professional guidance and support to families faced with difficult decisions 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 Consider difficult role of family members as translators, in view of family dynamics and possible conflicts

43 A. Surbone MD PhD, New York University Cultural differences and role of family translators Elderly family members Elderly family members Kids and teenagers Kids and teenagers Members with conflicting issues or different goals Members with conflicting issues or different goals Members with different degrees of acculturation Members with different degrees of acculturation

44 Cross-cultural aspects of communication CULTURAL COMPETENCE

45 A. Surbone MD PhD, New York University 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

46 A. Surbone MD PhD, New York University Cultural concordance or cultural competence? Cultural concordance between patient and physician or nurse may Cultural concordance between patient and physician or nurse may increase satisfaction increase satisfaction improve communication improve communication avoid bedside misunderstandings avoid bedside misunderstandings decrease unequal treatment decrease unequal treatment Cultural competence allows all of us to deliver optimal cancer cancer to all our patients Surbone & Kagawa-Singer, in press 2009

47 The art of caring

48 A. Surbone MD PhD, New York University Ten tips for oncology professionals Do not make assumptions based on race, nationality, language, age, gender, educational level and SES 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 Ask patients to briefly describe their cultural and religious background When appropriate, acknowledge your own background When appropriate, acknowledge your own background Surbone A, Supp Care Cancer 2003

49 A. Surbone MD PhD, New York University 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 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 Ask patient what language they speak at home Offer professional translation, remembering to consider the translator as a “cultural mediator” 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 Double check to assure the translation of a relative or friend is correct and covers all relevant information Surbone A, Supp Care Cancer 2003

50 A. Surbone MD PhD, New York University Ten tips for oncology professionals Never assume that patients do not wish to receive information, discuss prognosis & death, or undergo treatments 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 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 Ask patients for their understanding of the illness and for they changing communication needs & preferences over time Surbone A, Supp Care Cancer 2003

51 A. Surbone MD PhD, New York University Thanks to all my patients for teaching me about their wonderful cultures. Thank you for your attention!


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