1. EPEC™-O Education in Palliative and End-of-Life Care - Oncology Cultural Considerations When Caring for African Americans

2. EPEC  - Oncology Education in Palliative and End-of-life Care - Oncology : Cultural Considerations When Caring for African Americans Module 7-AA: Communicating Effectively Module 7-AA: Communicating Effectively

3. Overall Message Effective, culturally sensitive provider-patient/family communication is essential to the delivery of quality cancer palliative care

4. Objectives l Describe essential components of effective provider-patient/family communication l Describe outcomes of effective communication l Describe deficiencies in communication between healthcare providers and African American patients and families l Describe essential components of effective provider-patient/family communication l Describe outcomes of effective communication l Describe deficiencies in communication between healthcare providers and African American patients and families

5. Objectives cont.: l List evidence-based interventions that improve communication in health care l Use a six-step protocol (SPIKES) w2to deliver bad news l List evidence-based interventions that improve communication in health care l Use a six-step protocol (SPIKES) w2to deliver bad news

6. Video

7. Importance of Communication in Health Care IOM Crossing the Quality Chasm l Patient-centered care key measure of quality l Patient-centered communication integral to patient- centered care IOM Crossing the Quality Chasm l Patient-centered care key measure of quality l Patient-centered communication integral to patient- centered care

8. Importance of Communication in Cancer Care

9. NCI: Six Fundamental Functions of Healthcare Provider Communication 1. Fostering healing relationships 2. Exchanging information 3. Responding to emotions 4. Managing uncertainty 5. Making informed decisions 6. Enabling patient self-management 1. Fostering healing relationships 2. Exchanging information 3. Responding to emotions 4. Managing uncertainty 5. Making informed decisions 6. Enabling patient self-management

10. Six Core Functions of Communication

11. What is “Good” Communication? Patients and families want to: l Be involved in the care process l Be informed and given choices (healthcare providers should be open and honest, use plain language) l Be seen/known as persons & treated with respect l Receive support, encouragement, and validation of treatment choices mad e Patients and families want to: l Be involved in the care process l Be informed and given choices (healthcare providers should be open and honest, use plain language) l Be seen/known as persons & treated with respect l Receive support, encouragement, and validation of treatment choices mad e

12. Include the Family

13. What is “Good” Communication, cont.? In addition, African Americans want: l Inclusion of family in process of care l Be accepted as “experts” in their own disease process l Receive respect and acceptance of personal importance of cultural and religious beliefs In addition, African Americans want: l Inclusion of family in process of care l Be accepted as “experts” in their own disease process l Receive respect and acceptance of personal importance of cultural and religious beliefs

14. Healthcare Provider Communicating with Patient

15. Cancer Prognostic Discussions Important healthcare provider behaviors l Willingness to initiate/engage in conversations about death l Employing eye contact (if culturally accepted) l Active listening l Exploring emotions Important healthcare provider behaviors l Willingness to initiate/engage in conversations about death l Employing eye contact (if culturally accepted) l Active listening l Exploring emotions

16. Cancer Prognostic Discussions, cont. Important behaviors, cont. l Providing patient with sense of control l Giving information in digestible bites l Using plain language/ avoiding euphemisms l Interpreting cancer statistics for patient in an understandable way Important behaviors, cont. l Providing patient with sense of control l Giving information in digestible bites l Using plain language/ avoiding euphemisms l Interpreting cancer statistics for patient in an understandable way

17. The Importance of Hope

18. Importance of Sustaining Hope l Combine honesty with sensitivity and empathy l Realize patient’s hopes are wide- ranging and may change over time l Sense of hope obtained from relationships, beliefs, faith, dignity l The importance of “being there”, affirmation of worth l Combine honesty with sensitivity and empathy l Realize patient’s hopes are wide- ranging and may change over time l Sense of hope obtained from relationships, beliefs, faith, dignity l The importance of “being there”, affirmation of worth

19. For African Americans, Sense of Hope Sustained By: l Faith, which is a primary resource to cope with bad news l Healthcare provider “being there” and treating the patient as a whole person l Having a sense of control over treatment choices l Faith, which is a primary resource to cope with bad news l Healthcare provider “being there” and treating the patient as a whole person l Having a sense of control over treatment choices

20. Patient-Centered Care Core attributes: 1. Consideration of patients’ needs, perspectives, individual experiences 2. Provision of opportunity for patients to participate in their care 3. Enhancement of patient-clinician relationship Core attributes: 1. Consideration of patients’ needs, perspectives, individual experiences 2. Provision of opportunity for patients to participate in their care 3. Enhancement of patient-clinician relationship

21. Patient-Centered Communication 1. Elicits understanding and validates patient’s perspective 2. Understands patient within his/her psychological & social context 3. Reaches shared understanding of patient’s problem and treatment 4. Helps patient share power → be involved in care choices 1. Elicits understanding and validates patient’s perspective 2. Understands patient within his/her psychological & social context 3. Reaches shared understanding of patient’s problem and treatment 4. Helps patient share power → be involved in care choices

22. Patient- Centered Provider Behaviors

23. Patient-Centered Healthcare Provider Behaviors Nonverbal BehaviorsVerbal Behaviors Maintaining eye contactAvoiding interruptions Forward lean to indicate attentivenessEstablishing purpose of visit Nodding to indicate understandingEncouraging patient participation Absence of distracting movementsSoliciting patient’s beliefs, values, and preferences Eliciting & validating patient’s emotions Asking about family and social context Providing sufficient information Providing clear, jargon-free explanations Checking for patient understanding Offering reassurance Offering encouragement & support Epstein et al.

24. From the Field of Nursing l Unconditional positive regard of the patient and family l Empathic understanding l Validation of patients as experts in their own health l Unconditional positive regard of the patient and family l Empathic understanding l Validation of patients as experts in their own health

25. The COMFORT Initiative Communicate Narrative clinical practice Verbal clarity Non-verbal immediacy (eye contact, attentiveness, self-awareness) Orientation & Opportunity Support health literacy Acknowledge vulnerability Formulate pathway of care Mindfulness Staying in the moment Lack of pre-judgment Adaptation to rapid changes Family Family as a second-order patient Family as a conduit to the patient Family meetings to help clarify goals for the patient Oversight Installation of coordinated care Relieve caregiver/patient burden in complicated cases Reiterative & Radically adaptive Time invested and quality of encounter most important Nonlinear communication Patient’s acceptance drives communication Team Interdisciplinary team members trained in various aspects of PC Assurance of non-abandonment Continuity of care From: Wittenberg-Lyles

26. Culturally competent Communication

27. Culturally Competent Communication Incorporates: l awareness/knowledge of healthcare disparities l understanding that socio-cultural factors have important effects on health beliefs and behaviors l having the skills to manage these factors appropriately. Incorporates: l awareness/knowledge of healthcare disparities l understanding that socio-cultural factors have important effects on health beliefs and behaviors l having the skills to manage these factors appropriately.

28. Culturally Competent Communication, cont. Focus on: l Process of communication l Cross-cutting cultural/social issues & health beliefs l Individual patient as teacher Focus on: l Process of communication l Cross-cutting cultural/social issues & health beliefs l Individual patient as teacher

29. Culturally Competent Communication, cont. l Identify/negotiate:  Style of communication  Decision-making preferences  Roles of family members  Issues of mistrust, prejudice, racism l Identify/negotiate:  Style of communication  Decision-making preferences  Roles of family members  Issues of mistrust, prejudice, racism

30. Communication Matters!

31. Why Does Communication Matter? Effective communication outcomes: l Increased patient satisfaction l Increased trust l Greater adherence to treatment l Positive health outcomes:  Diminished psychological distress  Improved quality of life  Improved self-management  Improved physical outcomes (e.g. BP, Blood Glu) Effective communication outcomes: l Increased patient satisfaction l Increased trust l Greater adherence to treatment l Positive health outcomes:  Diminished psychological distress  Improved quality of life  Improved self-management  Improved physical outcomes (e.g. BP, Blood Glu)

32. In Addition: The ability to effectively communicate with cancer patients and families is associated with reduced clinician “burn out”. In: Cancer, Culture and Communication. Moore RJ, Spiegel D, eds. The ability to effectively communicate with cancer patients and families is associated with reduced clinician “burn out”. In: Cancer, Culture and Communication. Moore RJ, Spiegel D, eds.

33. Outcomes of Effective Communication Communication Outcomes Intermediate Outcomes Health OutcomesSocietal Outcomes Strong patient/family- clinician relationship Strong therapeutic alliances Survival and disease-free survival -Prevention/early detection of cancer -Accurate diagnosis -Completion evidence-based Rx -Maintenance of remission -Safe & comfortable dying Cost- effective health services utilization Effective information exchange Patient knowledge / understanding Reduction in healthcare disparities Validation of emotions Emotional self- management From: Epstein et al.

34. Outcomes of Effective Communication, continued Communication Outcomes Intermediate Outcomes Health Outcomes Societal Outcomes Acknowledgement, understanding, tolerance of uncertainty High quality medical decisions Health- related QOL -Functioning: cognitive, physical, mental, social -Well-being: physical, emotional, spiritual -Health perceptions Ethical practice (e.g. informed consent) Family/social support & advocacy Patient participation in decision making Patient self-efficacy, empowerment Coordinated careImproved adherence & self-care Access to & effective use of care From: Epstein et al.

35. Factors Affecting Communication Factors that impede African Americans from seeking medical information about cancer l Fear of cancer as a death sentence l Family history/ “lived experience” l Privacy issues l Cancer misinformation Matthews et al. J Health Communications. 2002;7:205-219 Factors that impede African Americans from seeking medical information about cancer l Fear of cancer as a death sentence l Family history/ “lived experience” l Privacy issues l Cancer misinformation Matthews et al. J Health Communications. 2002;7:205-219

36. Factors Affecting Communication, cont. l Coping style: stigma against seeking help l Lack of resources l Preference for receiving information from family/friends vs. from professionals l Mistrust of doctors/ medical community l Religion, if person relies on faith to the exclusion of medical interventions From: Matthews AK l Coping style: stigma against seeking help l Lack of resources l Preference for receiving information from family/friends vs. from professionals l Mistrust of doctors/ medical community l Religion, if person relies on faith to the exclusion of medical interventions From: Matthews AK

37. Partnering With the Patient

38. Dimensions of the Healthcare Provider and Patient Relationship 1. Communication 2. Partnership: Degree to which encounter is participatory 3. Power: Mutuality: Patient & Provider power both high [preferred] Consumerism: Patient power high/ Provider power low Paternalism: Patient power low/ Provider power high Default: Both Patient & Provider power low 1. Communication 2. Partnership: Degree to which encounter is participatory 3. Power: Mutuality: Patient & Provider power both high [preferred] Consumerism: Patient power high/ Provider power low Paternalism: Patient power low/ Provider power high Default: Both Patient & Provider power low

39. Dimensions of the Relationship, continued 4. Trust: African Americans less trusting of providers and healthcare system 5. Knowing: To be familiar with a person & his/her life story 6. Concordance: Shared identity between patients and physicians across visible and less visible dimensions From: Cooper et al. 4. Trust: African Americans less trusting of providers and healthcare system 5. Knowing: To be familiar with a person & his/her life story 6. Concordance: Shared identity between patients and physicians across visible and less visible dimensions From: Cooper et al.

40. Problems with Non-Concordant Patient-Provider Encounters: Physicians’ perceptions affected by socio- demographics: Tend to be more negative toward African Americans and members of low & middle SES groups From: Cooper/ van Ryn From: Cooper/ van Ryn Physician’s perception of patient’s literacy skills more predictive of follow-up than patient’s actual literacy skills Physicians’ perceptions affected by socio- demographics: Tend to be more negative toward African Americans and members of low & middle SES groups From: Cooper/ van Ryn From: Cooper/ van Ryn Physician’s perception of patient’s literacy skills more predictive of follow-up than patient’s actual literacy skills From: Tessler Lindau et al.

41. Non-Concordant Patient-Provider Encounter

42. Effect of Ethnic Differences on Communication Encounter: In ethnically discordant encounters, healthcare providers tend to : l Provide less information & focus more narrowly on biomedical information l Spend less time rapport-building l Be more verbally dominant l Be less participatory l Have less positive affect (also true for the patients) In ethnically discordant encounters, healthcare providers tend to : l Provide less information & focus more narrowly on biomedical information l Spend less time rapport-building l Be more verbally dominant l Be less participatory l Have less positive affect (also true for the patients)

43. Dimensions of Similarity

44. Personal vs. Ethnic Patient ratings of better care are more associated with perceived personal similarities than with ethnic factors. The healthcare provider who uses patient- centered communication (skilled in informing, showing respect, supporting patient) can transcend issues of race and sex to establish a connection with the patient→ greater patient satisfaction, trust, adherence to treatment. From: Street et al. Personal vs. Ethnic Patient ratings of better care are more associated with perceived personal similarities than with ethnic factors. The healthcare provider who uses patient- centered communication (skilled in informing, showing respect, supporting patient) can transcend issues of race and sex to establish a connection with the patient→ greater patient satisfaction, trust, adherence to treatment. From: Street et al.

45. Effective interventions to improve communication l Slow down l Use plain language l Show/ draw pictures l Limit the amount of information provided & repeat it l Produce/ use easy-to-read written material l Confirm the patient’s understanding l Create a shame-free environment l Address the needs of patients with disabilities From HRSA: Unified Health Communication l Slow down l Use plain language l Show/ draw pictures l Limit the amount of information provided & repeat it l Produce/ use easy-to-read written material l Confirm the patient’s understanding l Create a shame-free environment l Address the needs of patients with disabilities From HRSA: Unified Health Communication

46. General Methods to Improve Treatment Adherence l Simplify treatment regimen l Use motivational interviewing principles (e.g., 5A’s Behavior Change Model) l Use participatory approach l Use team-change interventions (distributing responsibilities to the patient/family among the interdisciplinary team) From: Cooper et al. l Simplify treatment regimen l Use motivational interviewing principles (e.g., 5A’s Behavior Change Model) l Use participatory approach l Use team-change interventions (distributing responsibilities to the patient/family among the interdisciplinary team) From: Cooper et al.

47. Assessing Patient Understanding From HRSA Unified Health Communication

48. Family Meetings with African Americans

49. 1. Pre-schedule at convenient time for all 2. Advocate for private space 3. Allow sufficient time for questions, concerns, preferences to be expressed 4. Identify goals of care across the disease trajectory 5. Offer the opportunity for spiritual care representative to participate 6. Provide culturally sensitive counseling to families re: maximizing personal well-being 1. Pre-schedule at convenient time for all 2. Advocate for private space 3. Allow sufficient time for questions, concerns, preferences to be expressed 4. Identify goals of care across the disease trajectory 5. Offer the opportunity for spiritual care representative to participate 6. Provide culturally sensitive counseling to families re: maximizing personal well-being

50. SPIKES Six-Step Protocol for Effective Communication SPIKESSix-step protocol Setting1. Set the stage. Perception2. What does the patient know? Invitation3. How much does the patient want to know? Knowledge4. Share the information. Emotion5. Respond to feelings. Subsequent6. Plan next steps and follow-up

51. Step 1: Getting Started l Plan what you will say  Confirm medical facts  Don’t delegate l Create a conducive environment l Allot adequate time  Prevent interruptions l Determine who else the patient would like present l Plan what you will say  Confirm medical facts  Don’t delegate l Create a conducive environment l Allot adequate time  Prevent interruptions l Determine who else the patient would like present

52. Step 2: What Does the Patient Know? l Establish what the patient knows l Assess ability to comprehend new bad news l Reschedule if unprepared l Establish what the patient knows l Assess ability to comprehend new bad news l Reschedule if unprepared

53. Step 3: How Much Does the Patient Want to Know ? l Recognize, support various patient preferences Decline voluntarily to receive information Designate someone to communicate on his or her behalf l People handle information differently Race, ethnicity, culture, religion, SES Age and developmental level l Recognize, support various patient preferences Decline voluntarily to receive information Designate someone to communicate on his or her behalf l People handle information differently Race, ethnicity, culture, religion, SES Age and developmental level

54. Advance Preparation l Initial assessment l Preparation for critical tests What does the patient know? (step 2) How does the patient handle information? (step 3) l Initial assessment l Preparation for critical tests What does the patient know? (step 2) How does the patient handle information? (step 3)

55. When Family Says “Don’t Tell”... l Legal obligation to obtain informed consent from the patient l Promote congenial family alliance l Honesty promotes trust l Ask the family→ Why not? What are you afraid I will say? Is there something I need to know about your culture? l Talk to the patient together l Legal obligation to obtain informed consent from the patient l Promote congenial family alliance l Honesty promotes trust l Ask the family→ Why not? What are you afraid I will say? Is there something I need to know about your culture? l Talk to the patient together

56. Step 4: Sharing the Information l Say it, then stop  Avoid monologue; promote dialogue  Avoid jargon, euphemisms  Pause frequently  Check for understanding  Use silence, body language l Don’t minimize severity  Avoid vagueness, confusion l Say it, then stop  Avoid monologue; promote dialogue  Avoid jargon, euphemisms  Pause frequently  Check for understanding  Use silence, body language l Don’t minimize severity  Avoid vagueness, confusion

57. Respond to Emotions

58. Step 5: Responding to Feelings Normal reactions l Affective response Tears, anger, sadness, love, anxiety, relief, other l Cognitive response Denial, blame, guilt, disbelief, fear, loss, shame, intellectualization l Basic psycho-physiologic response Fight-flight Normal reactions l Affective response Tears, anger, sadness, love, anxiety, relief, other l Cognitive response Denial, blame, guilt, disbelief, fear, loss, shame, intellectualization l Basic psycho-physiologic response Fight-flight

59. Step 5: Responding to Feelings, cont. l Be prepared for Outburst of strong emotion Broad range of reactions l Give time to react l Listen quietly, attentively l Encourage descriptions of feelings l Use nonverbal communication l Be prepared for Outburst of strong emotion Broad range of reactions l Give time to react l Listen quietly, attentively l Encourage descriptions of feelings l Use nonverbal communication

60. Step 6: Planning, Follow-up l Plan for next steps Additional information, tests Treat symptoms, referrals as needed l Discuss potential sources of support l Give contact information, set next appointment l Before leaving, assess patient safety and home supports l Repeat news at future visits l Plan for next steps Additional information, tests Treat symptoms, referrals as needed l Discuss potential sources of support l Give contact information, set next appointment l Before leaving, assess patient safety and home supports l Repeat news at future visits

61. When Language is a Barrier l Use a skilled translator Familiar with medical terminology Comfortable translating bad news l Consider telephone translation services if no translator on site l Avoid family as primary translators l Speak directly to the patient l Use a skilled translator Familiar with medical terminology Comfortable translating bad news l Consider telephone translation services if no translator on site l Avoid family as primary translators l Speak directly to the patient

62. Healthcare providers should clarify patient and family information needs and tailor communication based on this. It is essential that information about cancer is provided in a truthful but culturally sensitive manner. Healthcare providers should clarify patient and family information needs and tailor communication based on this. It is essential that information about cancer is provided in a truthful but culturally sensitive manner. Summary