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 2-AA: Plenary 2-AA: Models of Comprehensive Care Plenary 2-AA: Plenary 2-AA: Models of Comprehensive Care

3. Main message Funding and culturally sensitive service delivery systems must be in place to provide palliative care as a reliable component of comprehensive cancer care, and access to this care must be increased for African Americans and other vulnerable populations.

4. Objectives l Define hospice and palliative care and describe their history l Articulate a vision of comprehensive cancer care that includes palliative care from the day of diagnosis l Describe current and possible future funding and service delivery models for providing comprehensive cancer care l Define hospice and palliative care and describe their history l Articulate a vision of comprehensive cancer care that includes palliative care from the day of diagnosis l Describe current and possible future funding and service delivery models for providing comprehensive cancer care

5. Objectives cont. l Identify appropriate points in the cancer trajectory when palliative care and hospice services are appropriate l Understand barriers and facilitators to access and utilization of hospice and palliative services by African American patients l Identify appropriate points in the cancer trajectory when palliative care and hospice services are appropriate l Understand barriers and facilitators to access and utilization of hospice and palliative services by African American patients

6. Video

7. Comprehensive Cancer Care l Gaps in contemporary cancer care related to palliative and end-of-life care l Evolution of systems to deliver palliative care to patients with cancer and their families explored l Gaps in contemporary cancer care related to palliative and end-of-life care l Evolution of systems to deliver palliative care to patients with cancer and their families explored

8. Hospice in the US l 5000 hospices (3400 Medicare - certified) in US in 2009 l Care for 42% of deaths (40% of cancer deaths) l Median survival 21 days l 35% die within 7 days of admit l 5000 hospices (3400 Medicare - certified) in US in 2009 l Care for 42% of deaths (40% of cancer deaths) l Median survival 21 days l 35% die within 7 days of admit

9. Hospice care

10. Hospice Care l Safe and comfortable dying l Self-determined life closure l Effective grieving l Safe and comfortable dying l Self-determined life closure l Effective grieving

11. Levels of Care l Routine home care l General inpatient care l Continuous care l Respite care l Routine home care l General inpatient care l Continuous care l Respite care

12. Core Services l Interdisciplinary care Chaplain, nurse, social worker, counselor, volunteers, therapists Primary care physician Hospice physician l Bereavement counseling l Medical equipment, supplies l Medications and therapies related to the terminal diagnosis l Interdisciplinary care Chaplain, nurse, social worker, counselor, volunteers, therapists Primary care physician Hospice physician l Bereavement counseling l Medical equipment, supplies l Medications and therapies related to the terminal diagnosis

13. African Americans and Hospice Care

14. African Americans and Hospice l 8.7% of hospice patients in 2009 l 9% of hospice patients in 2007 l Less likely to want to die at home (50% African Americans vs. 70-90% Whites) l 8.7% of hospice patients in 2009 l 9% of hospice patients in 2007 l Less likely to want to die at home (50% African Americans vs. 70-90% Whites)

15. Factors Influencing Use of Hospice by African Americans l More likely to express discomfort discussing death l Greater preferences for aggressive care at EOL l Spiritual beliefs perceived to conflict with hospice l Distrust of healthcare system l More likely to express discomfort discussing death l Greater preferences for aggressive care at EOL l Spiritual beliefs perceived to conflict with hospice l Distrust of healthcare system

16. Effective Approaches to ↑ Access to Hospice for AAs l Hospital case identification followed by routine palliative care referral l Use of video to enhance goal-setting l Referral to “bridge” home-based palliative programs (e.g., AIM) l Enrollment in integrated health system with triggers for EOL discussions; hospice/palliative referral l Hospital case identification followed by routine palliative care referral l Use of video to enhance goal-setting l Referral to “bridge” home-based palliative programs (e.g., AIM) l Enrollment in integrated health system with triggers for EOL discussions; hospice/palliative referral

17. Palliative Care

18. Palliative Care (aka Supportive Care) l Therapies to relieve suffering and improve quality of life l May be combined with therapies aimed at remitting or curing cancer, or it may be the total focus of care l Therapies to relieve suffering and improve quality of life l May be combined with therapies aimed at remitting or curing cancer, or it may be the total focus of care

19. IOM Definition "Palliative care seeks to prevent, relieve, reduce or soothe the symptoms of disease or disorder without effecting a cure…Palliative care in this sense is not restricted to those who are dying…It attends closely to the emotional, spiritual, and practical needs and goals of patients and those close to them”

20. WHO 2002 Definition "Palliative care is an approach which improves quality of life of patients and their families facing life- threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."

21. Palliative Care Definitions: Common Focus on… l Relief of suffering l Improving quality of life throughout illness trajectory l Relief of suffering l Improving quality of life throughout illness trajectory

22. Important Features of Palliative Care: l Multifaceted/ multidimensional nature of living with life-threatening or terminal illness l Importance of support of patient AND family as a unit l Working as an interdisciplinary team to achieve goals of patient/ family l Multifaceted/ multidimensional nature of living with life-threatening or terminal illness l Importance of support of patient AND family as a unit l Working as an interdisciplinary team to achieve goals of patient/ family

23. The Interdisciplinary Team

24. Palliative Care

25. Development as a specialty l Curricula l Certification exams l Journals l Textbooks l Fellowship training l Formal recognition as a subspecialty: MD/DO, Nurse, SW, Nursing Assistant l Curricula l Certification exams l Journals l Textbooks l Fellowship training l Formal recognition as a subspecialty: MD/DO, Nurse, SW, Nursing Assistant

26. Delivering Palliative Care PrimaryPrimary SecondarySecondary TertiaryTertiary

27. Primary Palliative Care Core generalist knowledge/ competencies required of all health professionals that care for those with life-threatening, potentially terminal illnesses Core generalist knowledge/ competencies required of all health professionals that care for those with life-threatening, potentially terminal illnesses

28. Clinical (Secondary) Palliative Care

29. Tertiary Palliative Care l Academic research centers l Complex cases: PracticedResearchedTaught l Fellowship/ advanced practice training l Academic research centers l Complex cases: PracticedResearchedTaught l Fellowship/ advanced practice training

30. Settings for Palliative Care Delivery l Inpatient (hospital-based) units l Hospital consult services l Outpatient/ ambulatory care l Home care l Long-term care l Inpatient (hospital-based) units l Hospital consult services l Outpatient/ ambulatory care l Home care l Long-term care

31. Monitoring Quality in Hospice/ Palliative Programs l National Consensus Project o Clinical Practice Guidelines for Quality Palliative Care: 2 nd edition, 2009 l National Quality Forum o Framework for Palliative and Hospice Care Quality Measurement and Reporting. 2006 l Joint Commission accreditation of hospital palliative care programs, 2011 l National Consensus Project o Clinical Practice Guidelines for Quality Palliative Care: 2 nd edition, 2009 l National Quality Forum o Framework for Palliative and Hospice Care Quality Measurement and Reporting. 2006 l Joint Commission accreditation of hospital palliative care programs, 2011

32. Comprehensive Cancer Care Includes: l Anticancer therapy l Palliative/ Supportive care l End-of-life care l Bereavement care l Anticancer therapy l Palliative/ Supportive care l End-of-life care l Bereavement care

33. Family Is the Unit of Care

34. Integrated Palliative Care Models Appeal to African Americans: preference for simultaneous “curative” and palliative care preference for simultaneous “curative” and palliative care less emphasis on “death talk” less emphasis on “death talk” consistent with spiritual values consistent with spiritual values perceived to be more friendly to preferences for family involvement and informal advance care planning perceived to be more friendly to preferences for family involvement and informal advance care planning Appeal to African Americans: preference for simultaneous “curative” and palliative care preference for simultaneous “curative” and palliative care less emphasis on “death talk” less emphasis on “death talk” consistent with spiritual values consistent with spiritual values perceived to be more friendly to preferences for family involvement and informal advance care planning perceived to be more friendly to preferences for family involvement and informal advance care planning

35. Concurrent palliative care and anti-cancer therapy in Non-Small Cell Lung CA: l Improved quality of life l Less depressive symptoms l Less aggressive care at EOL l Earlier hospice referral l Longer median survival Temel et al. New England J Med. 363; 8. 2010 l Improved quality of life l Less depressive symptoms l Less aggressive care at EOL l Earlier hospice referral l Longer median survival Temel et al. New England J Med. 363; 8. 2010

36. Early Palliative Care May Improve Survival: Non-Small Cell Lung Cancer Temel et al. New England J Med. 363; 8. 2010 © MMS 2010

37. Comprehensive Cancer Care

38. Comprehensive Cancer Care in Context IOM: Crossing the Quality Chasm  Safe  Effective  Patient-centered  Timely  Efficient  Equitable IOM: Crossing the Quality Chasm  Safe  Effective  Patient-centered  Timely  Efficient  Equitable

39. The Patient is the Source of Control

40. IOM Healthcare Process Redesign Recommended Rules l Care based on continuous healing relationships l Customization based on patient needs and values l Patient as the source of control l Shared knowledge and information l Evidence-based decision-making l Care based on continuous healing relationships l Customization based on patient needs and values l Patient as the source of control l Shared knowledge and information l Evidence-based decision-making

41. IOM Healthcare Process Redesign Recommended Rules, cont. l Safety as a system property l Need for transparency l Anticipation of needs l Continuous decrease in waste l Cooperation/ coordination among clinicians l Safety as a system property l Need for transparency l Anticipation of needs l Continuous decrease in waste l Cooperation/ coordination among clinicians

42. The Chronic Care Model for Cancer ©Ed Wagner 2011. Used with permission. Source: Wagner presentation (March 1, 2011)

43. A Helping Hand

44. Evolving Healthcare Models l Patient navigation l Community health workers l Program of All-Inclusive Care for the Elderly (PACE) l Patient navigation l Community health workers l Program of All-Inclusive Care for the Elderly (PACE)

45. Evolving Healthcare Models, cont. l Community-based collaborative care networks l Evidence-based care transition models l Patient-centered medical home l Community-based collaborative care networks l Evidence-based care transition models l Patient-centered medical home

46. The Patient Protection and Affordable Care Act of 2010 Accountable Care Organizations (ACOs) l Legal entity l Group of participants (providers, suppliers) l Shared governance l Quality performance standards l Shared risk: Gains or losses Accountable Care Organizations (ACOs) l Legal entity l Group of participants (providers, suppliers) l Shared governance l Quality performance standards l Shared risk: Gains or losses

47. Where does Comprehensive Cancer Care (including palliative care) fit in? Importance of advocating for inclusion of hospice and palliative care as a core element of ACOs for the benefit of our patients and families [AAHPM, NHPCO] Importance of advocating for inclusion of hospice and palliative care as a core element of ACOs for the benefit of our patients and families [AAHPM, NHPCO]

48. Summary Funding and service delivery systems must be in place to assure access to palliative care as a reliable component of comprehensive cancer care for all Americans, including African Americans and other vulnerable populations.