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 Plenary-AA: Cancer and the African American ExperiencePlenary-AA: Cancer and the African American Experience

3. Overall Message African Americans suffer a higher burden of cancer and health inequities in cancer screening, diagnosis and treatment, cancer survivorship, and palliative and end-of-life care

4. Objectives The participant will be able to: l Describe African American (AA) demographics related to health/disease l Identify trends in cancer incidence, prevalence, and mortality in AAs l Describe sources of disparities in cancer incidence, survival rates and treatment outcomes in AAs The participant will be able to: l Describe African American (AA) demographics related to health/disease l Identify trends in cancer incidence, prevalence, and mortality in AAs l Describe sources of disparities in cancer incidence, survival rates and treatment outcomes in AAs

5. Objectives, continued l Describe the influence of socio- cultural, environmental, and biologic factors on access, utilization and outcomes of cancer and palliative/ end-of-life treatment in AAs l Describe effective strategies to: o Address disparities in screening, diagnosis, treatments and outcomes o Improve access to and the quality of palliative and end of life care l Describe the influence of socio- cultural, environmental, and biologic factors on access, utilization and outcomes of cancer and palliative/ end-of-life treatment in AAs l Describe effective strategies to: o Address disparities in screening, diagnosis, treatments and outcomes o Improve access to and the quality of palliative and end of life care

6. Video: Cancer and the African- American Experience

7. Who’s an African American?

8. l l No biological basis for racial distinctions l l Ethnicity- from “ethnos”, meaning “people” or “tribe”   Cultural, language, and geographic differences among people who share a common community l l No biological basis for racial distinctions l l Ethnicity- from “ethnos”, meaning “people” or “tribe”   Cultural, language, and geographic differences among people who share a common community Race, Ethnicity, and Culture

9. l l Culture   Not equivalent to race and ethnicity   Related to o o Shared communication system o o Similar physical and social environment o o Common beliefs, values, traditions, and world view o o Similar lifestyles, attitudes, and behaviors l l Culture   Not equivalent to race and ethnicity   Related to o o Shared communication system o o Similar physical and social environment o o Common beliefs, values, traditions, and world view o o Similar lifestyles, attitudes, and behaviors Race, Ethnicity, and Culture, continued

10. African American Population Demographics Population demographics: 42 million Americans (13.5% of population), 56% in the South  1 in 4 live in poverty (vs. 1 in 10 Whites)  1 in 5 have no health insurance (vs. 1 in 10 Whites)  84% have at least high school diploma Population demographics: 42 million Americans (13.5% of population), 56% in the South  1 in 4 live in poverty (vs. 1 in 10 Whites)  1 in 5 have no health insurance (vs. 1 in 10 Whites)  84% have at least high school diploma

11. Inadequate physical and social environment Inadequate information and knowledge Risk- promoting lifestyle, attitude, behavior Diminished access to health care Freeman, H.P. JNCI April 1991 Used with permission

12. Some African Americans May Lack Access to Healthy Food Choices

13. Inadequate Physical Environment l Food deserts l Lack of recreation areas l Unsafe neighborhoods l Food deserts l Lack of recreation areas l Unsafe neighborhoods

14. Risk-Promoting Lifestyles Among African Americans l Increased rates of obesity (37 percent overall; 42 percent of females Contributes to 1/3 of cancers) l Smoking rates 23 percent males, 19 percent females l Decreased rates physical activity l Increased rates of obesity (37 percent overall; 42 percent of females Contributes to 1/3 of cancers) l Smoking rates 23 percent males, 19 percent females l Decreased rates physical activity

15. Inadequate Knowledge l African American and White men with < high school education have twice the cancer death rate l Inadequate health literacy adversely impacts treatment adherence l At risk groups include the elderly, minorities, the poor l African American and White men with < high school education have twice the cancer death rate l Inadequate health literacy adversely impacts treatment adherence l At risk groups include the elderly, minorities, the poor

16. Diminished Access to Health Care leads to Poorer Outcomes Insurance status and source of care African American Non-Hispanic White Uninsured rate21%11% No usual source of care 24%18% Office-based care57%73% Hospital-based care 18%8% ER1%0.4%

17. Low Income African Americans More Often than Whites Report: l Being uninsured l Accessing care at emergency rooms and free or low-income clinics l Worrying about access to healthcare l Being turned away from healthcare l Lack of provider continuity and rapid turnover l Perceiving care system as inefficient l Being uninsured l Accessing care at emergency rooms and free or low-income clinics l Worrying about access to healthcare l Being turned away from healthcare l Lack of provider continuity and rapid turnover l Perceiving care system as inefficient

18. Practical Access Barriers to Healthcare Among the Poor l Lack finances to purchase needed health services and treatments ( e.g., medications, diagnostic tests, health provider fees) l Transportation difficulties (e.g., no car) l Difficulties taking leave from work to seek care (e.g., no paid leave available, employer will not allow time off) l Difficulties arranging childcare l Lack finances to purchase needed health services and treatments ( e.g., medications, diagnostic tests, health provider fees) l Transportation difficulties (e.g., no car) l Difficulties taking leave from work to seek care (e.g., no paid leave available, employer will not allow time off) l Difficulties arranging childcare

19. Provider/Patient Race: Effect on Interaction

20. Race discordantRace concordant Less participatoryMore participatory Less social talk by MDMore social talk by MD Less positive MD affectMore positive MD affect Less patient satisfactionMore patient satisfaction

21. African Americans and Cancer l Higher cancer incidence rates for most sites l Poorer 5-year survival than Whites l Lower rates of long-term survival l Highest incidence of prostate cancer in the world l Lower incidence/ higher mortality from breast cancer l Higher cancer incidence rates for most sites l Poorer 5-year survival than Whites l Lower rates of long-term survival l Highest incidence of prostate cancer in the world l Lower incidence/ higher mortality from breast cancer

22. African Americans and Cancer: Incidence Rates per 100,000 SexAfrican American White Male624.0564.3 Female399.1431.1

23. African Americans and Cancer: Death Rates per 100,000 By Sex and Leading Cancers African American White Male296.5227.5 Female180.6158.8 Breast Cancer32.423.9 Prostate Cancer54.222.9 Lung Cancer in males 87.571.1

24. Cancer Stage and Survival by Race Jemal, A. et al. CA Cancer J Clin 2010 © ACS 2010

25. Cancer Stage and Survival by Race Jemal, A. et al. CA Cancer J Clin 2010 © ACS 2010

26. Reasons for Cancer Disparities Adapted from Gabram et al. Effects of an outreach and internal navigation program on breast cancer diagnosis in an urban cancer center with a large African-American Population. Cancer 2008 © American Cancer Society. This material is reproduced with permission of John Wiley & Sons, Inc.

27. Why Cancer Disparities Among African Americans? l Exposure to key risk factors & higher burden of comorbid illnesses l Lower access to and utilization of screening services & treatment l Diagnosed at more advanced stage e.g., low income, lack health insurance, lower education level, poor breast cancer knowledge all contribute to a delay in reporting self-discovered breast symptoms l l Delays between diagnosis & treatment onset l Exposure to key risk factors & higher burden of comorbid illnesses l Lower access to and utilization of screening services & treatment l Diagnosed at more advanced stage e.g., low income, lack health insurance, lower education level, poor breast cancer knowledge all contribute to a delay in reporting self-discovered breast symptoms l l Delays between diagnosis & treatment onset

28. Cancer Disparities, cont. Biologic factors: (less salient than social factors) Biologic factors: (less salient than social factors) Genetic/ epigenetic/ biologic variance based on geographic area of origin (sub-Saharan Africa) Genetic/ epigenetic/ biologic variance based on geographic area of origin (sub-Saharan Africa) o Increased incidence triple negative/ basal breast ca (1 in 3 vs. 1 in 10 in Whites) o Increased incidence more aggressive prostate ca o Differing pharmacokinetics: treatment effects and side effects Biologic factors: (less salient than social factors) Biologic factors: (less salient than social factors) Genetic/ epigenetic/ biologic variance based on geographic area of origin (sub-Saharan Africa) Genetic/ epigenetic/ biologic variance based on geographic area of origin (sub-Saharan Africa) o Increased incidence triple negative/ basal breast ca (1 in 3 vs. 1 in 10 in Whites) o Increased incidence more aggressive prostate ca o Differing pharmacokinetics: treatment effects and side effects

29. From Cancer Patient to Cancer Survivor: Lost in Transition Survivorship plan of care components: l Prevention of recurrent and new cancers, and late effects of cancer treatment l Surveillance for cancer spread, recurrent, or second cancer l Intervention for consequences of cancer and its treatment l Coordination between oncology and primary care providers Hewitt et al. 2006 IOM / ASCO Treatment Plan & Summary Resources Survivorship plan of care components: l Prevention of recurrent and new cancers, and late effects of cancer treatment l Surveillance for cancer spread, recurrent, or second cancer l Intervention for consequences of cancer and its treatment l Coordination between oncology and primary care providers Hewitt et al. 2006 IOM / ASCO Treatment Plan & Summary Resources

30. Economic Impact of Cancer l 62.1% of bankruptcies related to costs of medical care (3/4 had health insurance) l Risk of bankruptcy: increased with longer survival, age less than 65, low socioeconomic status l Face loss of health insurance, increased out of pocket medical costs, unemployment or underemployment l 62.1% of bankruptcies related to costs of medical care (3/4 had health insurance) l Risk of bankruptcy: increased with longer survival, age less than 65, low socioeconomic status l Face loss of health insurance, increased out of pocket medical costs, unemployment or underemployment

31. Cancer Survivorship in African Americans

32. African American Priorities A National Action Plan for Cancer Survivorship: African American Priorities 2006 Prioritized Cancer Survivorship Topics Crosscutting Issues 1.Access to quality care and services: Treatment, pain & symptom control, EOL care 1.Develop and promote patient navigation systems for cancer survivors 2. Education, training, communication: Survivor, provider, public 2.Develop / disseminate public education programs on informed decision-making for cancer survivors 3.Infrastructure, programs, policies 3.Develop/ disseminate clinical practice guidelines for each stage of cancer survivorship 4.Applied research and surveillance 4.Develop comprehensive database on cancer survivorship 5.Develop comprehensive evaluation systems: monitor cancer survivorship issues and services

33. Needs of Cancer Survivors l Comprehensive assessment (physical, psychosocial, spiritual) l Information sharing and empathic listening and communication skills l Comprehensive assessment (physical, psychosocial, spiritual) l Information sharing and empathic listening and communication skills

34. Cancer Survivorship in African Americans l 942,400 African American cancer survivors in January 2007 l 8% of cancer survivor population l Less likely to survive long term l Shared decision-making l Care planning and care coordination American Cancer Society. Cancer Facts & Figures for African Americans 2011-2012 American Cancer Society. Cancer Facts & Figures for African Americans 2011-2012 l 942,400 African American cancer survivors in January 2007 l 8% of cancer survivor population l Less likely to survive long term l Shared decision-making l Care planning and care coordination American Cancer Society. Cancer Facts & Figures for African Americans 2011-2012 American Cancer Society. Cancer Facts & Figures for African Americans 2011-2012

35. How African Americans Cope

36. Coping with Cancer Among African Americans l Importance of spirituality/ personal relationship with God l Supportive networks (friends, family, support groups) l Connectedness to self, God, nature, family/friends, other survivors, healthcare providers l Importance of spirituality/ personal relationship with God l Supportive networks (friends, family, support groups) l Connectedness to self, God, nature, family/friends, other survivors, healthcare providers

37. Palliative Care: A Unique Approach WHO definition: Palliative Care improves the quality of life of patients and families who face life-threatening illness, providing pain and symptom relief, spiritual and psychosocial support to patients and families from diagnosis to the end-of-life and bereavement. Palliative Care improves the quality of life of patients and families who face life-threatening illness, providing pain and symptom relief, spiritual and psychosocial support to patients and families from diagnosis to the end-of-life and bereavement. WHO definition: Palliative Care improves the quality of life of patients and families who face life-threatening illness, providing pain and symptom relief, spiritual and psychosocial support to patients and families from diagnosis to the end-of-life and bereavement. Palliative Care improves the quality of life of patients and families who face life-threatening illness, providing pain and symptom relief, spiritual and psychosocial support to patients and families from diagnosis to the end-of-life and bereavement.

38. Palliative Care l Utilizes a team approach l Goal oriented/ shared decision- making l Prevent & treat symptoms of disease l Prevent & treat side effects of treatment l Address psychosocial & spiritual issues l Utilizes a team approach l Goal oriented/ shared decision- making l Prevent & treat symptoms of disease l Prevent & treat side effects of treatment l Address psychosocial & spiritual issues

39. l Patient-centered l Beneficial l Timely l Safe l Efficient l Equitable Based on IOM domains of quality care l Patient-centered l Beneficial l Timely l Safe l Efficient l Equitable Based on IOM domains of quality care Palliative Care Quality

40. Access Barriers: Palliative Care/ Hospice for African Americans l Health care professionals lack knowledge and skills at primary and advanced level l Often perceived conflicts in goals of care l Systems obstacles (including reimbursement) l Perceived cultural barriers l Health care professionals lack knowledge and skills at primary and advanced level l Often perceived conflicts in goals of care l Systems obstacles (including reimbursement) l Perceived cultural barriers

41. How do Blacks & Whites Differ in their Desire for Ventilation? Blackhall L et. al. Social Science & Medicine. 1999;48: 1779-89

42. Advance Care Planning Racial/Ethnic Attitudes Source: California Health Foundation 2006

43. Black-White Physician Differences Mebane et al JAGS 1999;47:579-91

44. Preferences for Life-Sustaining Care Affected By… l Cultural beliefs and values l Historic and current healthcare inequalities l Religious beliefs and preferences

45. End-of-Life Preferences of African Americans

46. Challenges to Quality EOL Cancer Care for African Americans l African Americans more likely to prefer aggressive care in late cancer stages l African Americans less likely to have written advance directives l Less likely to enroll in hospice & more likely to stop hospice care l Cultural and spiritual values often influence end-of-life decisions l African Americans more likely to prefer aggressive care in late cancer stages l African Americans less likely to have written advance directives l Less likely to enroll in hospice & more likely to stop hospice care l Cultural and spiritual values often influence end-of-life decisions

47. End-of-Life Care Preferences Race & Health Literacy Volandes AE et al. Health literacy not race predicts end-of-life care preferences. J Palliat Med 2008;11(5):754-62. Courtesy of Mary Ann Liebert, Inc., publishers

48. Best Practices Throughout the Spectrum of Cancer Care l Kin Keeper Program l Patient navigation l AIM Program l Integrated health systems l Palliative consults l Kin Keeper Program l Patient navigation l AIM Program l Integrated health systems l Palliative consults

49. Kin Keeper Cancer Prevention Intervention l Receipt of cancer prevention information in own home with family support l Increases health literacy l Increases follow-through with cancer screening l Receipt of cancer prevention information in own home with family support l Increases health literacy l Increases follow-through with cancer screening

50. Patient Navigation

51. Freeman, H.P. Patient Navigation Institute 2006

52. Breast Cancer 5-year Survival Rates Before and After Institution of Patient Navigation Oluwole SF and Freeman HP. J Am Coll Surg 2003;196:180-188 Before access to screening and patient navigation (1964-1986) After access to screening and patient navigation (1995-2000)

53. Integrated Health Systems l Kaiser Permanente o 65% enrollment in hospice for patients with lung, colorectal, breast, prostate cancer. No variation by race. l Veterans Administration o Increased rate of advance directive completion by African Americans. l Kaiser Permanente o 65% enrollment in hospice for patients with lung, colorectal, breast, prostate cancer. No variation by race. l Veterans Administration o Increased rate of advance directive completion by African Americans.

54. Advanced Illness Management Program l Home-based l Simultaneous curative and comfort care for seriously ill l Increased rates of hospice referral among African Americans (47% vs. 18% not in AIM program) l Home-based l Simultaneous curative and comfort care for seriously ill l Increased rates of hospice referral among African Americans (47% vs. 18% not in AIM program)

55. Palliative Consultation l Concurrent palliative care improves QOL, leads to earlier hospice referral, increased median survival l Public Hospital palliative consults for African American patients with advanced cancer: 90% hospice enrollment post-discharge; 89% completion advance directives l Concurrent palliative care improves QOL, leads to earlier hospice referral, increased median survival l Public Hospital palliative consults for African American patients with advanced cancer: 90% hospice enrollment post-discharge; 89% completion advance directives

56. Cancer Clinical Trials l Importance of increasing enrollment of African Americans to cancer clinical trials l Physician recommendation most effective l Clinical Trial Shared Resource developed by Meharry l Church/ community engagement in recruitment l Importance of increasing enrollment of African Americans to cancer clinical trials l Physician recommendation most effective l Clinical Trial Shared Resource developed by Meharry l Church/ community engagement in recruitment

57. Summary African-American patients with cancer can experience greater access to palliative and hospice care with appropriate interventions.