Cross-cultural aspects of communication with cancer patients

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

2. Culture: definition Culture is the sum of theintegrated patterns of knowledge, beliefs and behavioursof a given community. Members sharethoughts, communication styles, ways of interacting, views of roles and relationships, values, practices, customs. Culture provides us with aweb of significance Olweny 1994; Swendson & Windsor, 1996; Kagawa-Singer 2003 A. Surbone MD PhD, New York University

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

4. 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 A. Surbone MD PhD, New York University

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

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

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? • Is cultural relativism an ethical justification? • Are there universal human values beyond culturally variable norms? A. Surbone MD PhD, New York University

9. 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 A. Surbone MD PhD, New York University

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

11. 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 A. Surbone MD PhD, New York University

12. 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 A. Surbone MD PhD, New York University

13. 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 A. Surbone MD PhD, New York University

14. 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 A. Surbone MD PhD, New York University

15. 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 A. Surbone MD PhD, New York University

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 A. Surbone MD PhD, New York University

19. Metaphors A. Surbone MD PhD, New York University

20. Metaphors A. Surbone MD PhD, New York University

21. Metaphors A. Surbone MD PhD, New York University

22. 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 A. Surbone MD PhD, New York University

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

24. 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) A. Surbone MD PhD, New York University

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

26. 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 A. Surbone MD PhD, New York University

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

28. 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 A. Surbone MD PhD, New York University

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

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

31. 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 Cross-cultural communication: what is the truth? A. Surbone MD PhD, New York University

32. 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 A. Surbone MD PhD, New York University

33. Cross-cultural aspects of communication PERSISTING & EMERGING ISSUES

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

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

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

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

38. 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 A. Surbone MD PhD, New York University

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

40. 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 A. Surbone MD PhD, New York University

41. 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 A. Surbone MD PhD, New York University

42. 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 A. Surbone MD PhD, New York University

43. 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 A. Surbone MD PhD, New York University

44. Cross-cultural aspects of communication CULTURAL COMPETENCE

45. 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 A. Surbone MD PhD, New York University

46. 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 A. Surbone MD PhD, New York University

47. The art of caring

48. 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 A. Surbone MD PhD, New York University

49. 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 A. Surbone MD PhD, New York University

50. 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 A. Surbone MD PhD, New York University