1. The EPEC-O Curriculum is produced by the EPEC TM Project with major funding provided by NCI, with supplemental funding provided by the Lance Armstrong Foundation. Education in Palliative and End-of-life Care - Oncology The Project EPEC-O TM

2. EPECEPECOOEPECEPECOOO EPECEPECOOEPECEPECOOO Plenary 1 Gaps in Oncology Plenary 1 Gaps in Oncology EPEC - Oncology Education in Palliative and End-of-life Care - Oncology

3. Overall message Gaps between current and desired practice need to be filled so that palliative care becomes an essential and inextricable part of comprehensive cancer care

4. Objectives l Describe the current cancer incidence, prevalence and mortality l Describe suffering associated with cancer l Define palliative care l Identify gaps in cancer care l Introduce the EPEC-O curriculum l Describe the current cancer incidence, prevalence and mortality l Describe suffering associated with cancer l Define palliative care l Identify gaps in cancer care l Introduce the EPEC-O curriculum

5. Video

6. U.S. incidence of cancer l 2.4 m / year diagnosed with cancer 1 m skin and in situ cancers l 1.3 m ‘serious’ cancers 2/3 cured (mostly surgically) 1/3 eventually die l 2.4 m / year diagnosed with cancer 1 m skin and in situ cancers l 1.3 m ‘serious’ cancers 2/3 cured (mostly surgically) 1/3 eventually die

7. U.S. prevalence of cancer l 9.8 m alive with cancer in 2001 Breast 22 % Prostate 17% Colorectal 11% Gynecologic 10% Lung 4% l 9.8 m alive with cancer in 2001 Breast 22 % Prostate 17% Colorectal 11% Gynecologic 10% Lung 4%

8. Overall U.S. cancer mortality l In 2002 557,271 died of cancer l 22.8% of all cause deaths l In 2002 557,271 died of cancer l 22.8% of all cause deaths

9. Patient / family transitions

10. Symptoms, suffering... l Multiple physical symptoms Inpatients with cancer averaged 13.5 symptoms, outpatients 9.7 Related to Cancer Adverse effects of medications, therapy Intercurrent illness l Multiple physical symptoms Inpatients with cancer averaged 13.5 symptoms, outpatients 9.7 Related to Cancer Adverse effects of medications, therapy Intercurrent illness Portenoy RK, et al. Qual Life Res. 1994.

11. ... Symptoms, suffering... l Multiple physical symptoms l Representative sample patients at home (n = 998) Dyspnea 71% Pain 50% Incontinence 36% l Multiple physical symptoms l Representative sample patients at home (n = 998) Dyspnea 71% Pain 50% Incontinence 36% Emanuel EJ, et al, N Engl J Med. 1999.

12. ... Symptoms, suffering l Psychological distress anxiety, depression, worry, fear, sadness, hopelessness, etc. 40% worry about “being a burden” l Psychological distress anxiety, depression, worry, fear, sadness, hopelessness, etc. 40% worry about “being a burden” Covinsky KE, et al, JAMA. 1994.

13. Social isolation l Americans live alone, in couples Working, frail or ill l Other family Live far away Have lives of their own l Friends have other obligations, priorities l Americans live alone, in couples Working, frail or ill l Other family Live far away Have lives of their own l Friends have other obligations, priorities

14. Caregiving l 90% of Americans believe it is a family responsibility l In population-based survey 87% needed caregiving 96% provided by family (72% women) 35% intermittent professional home care 15% paid for some help privately l 90% of Americans believe it is a family responsibility l In population-based survey 87% needed caregiving 96% provided by family (72% women) 35% intermittent professional home care 15% paid for some help privately Emanuel EJ, et al. Ann Int Med. 2000.

15. Financial pressures l 20% of family members quit work to provide care l Financial devastation 31% lost family savings 40% of families became impoverished l 20% of family members quit work to provide care l Financial devastation 31% lost family savings 40% of families became impoverished SUPPORT. JAMA. 1995.

16. Coping strategies l Vary from person to person l May become destructive Suicidal ideation Premature death by PAS or euthanasia l Vary from person to person l May become destructive Suicidal ideation Premature death by PAS or euthanasia

17. Place of care... l Patients want to be at home l Death in institutions 1949 - 50% of deaths 1958 – 61% 1980 to present – 74% 57% hospitals, 17% nursing homes, 20% home, 6% other (1992) l Patients want to be at home l Death in institutions 1949 - 50% of deaths 1958 – 61% 1980 to present – 74% 57% hospitals, 17% nursing homes, 20% home, 6% other (1992) Institute of Medicine. 1997.

18. ... Place of care l Majority of institutional admissions could be avoided l Generalized lack of familiarity with how to address suffering and quality of life issues l Majority of institutional admissions could be avoided l Generalized lack of familiarity with how to address suffering and quality of life issues

19. Gaps Fears l Pain & Suffering l Be a burden l Loss of control l Die in institution Fears l Pain & Suffering l Be a burden l Loss of control l Die in institution Desires l Be comfortable l Family able to cope l Sense of control l Die at home l Large gap between reality, desire

20. Public expectations l AMA Public Opinion Poll on Health Care Issues, 1997 “Do you feel your doctor is open and able to help you discuss and plan for care in case of life-threatening illness?” Yes 74% No 14% Don’t know 12% l AMA Public Opinion Poll on Health Care Issues, 1997 “Do you feel your doctor is open and able to help you discuss and plan for care in case of life-threatening illness?” Yes 74% No 14% Don’t know 12%

21. Patient expectations l Population-based survey of patients at home l 98% confidence in their physicians No differences between managed are and fee-for-service l Population-based survey of patients at home l 98% confidence in their physicians No differences between managed are and fee-for-service Slutsman J, et al. JAGS. 2003.

22. Palliative care l Treatment to relieve pain and suffering. l May be combined with therapies aimed at remitting or curing cancer, or it may be the total focus of care. l Treatment to relieve pain and suffering. l May be combined with therapies aimed at remitting or curing cancer, or it may be the total focus of care.

23. Conventional cancer care PresentationPresentationDeathDeath Anti-neoplastic tTherapy Bereavement Care 6m6m Medicare Hospice Benefit

24. Comprehensive cancer care PresentationPresentationDeathDeath Anti-neoplastic Therapy Bereavement Care Symptom Rx Relieve Suffering Relieve Suffering Symptom Rx Relieve Suffering Relieve Suffering 6m6m Palliative Care

25. 1998 ASCO survey l 6,645 oncologists surveyed l 118 questions l n = 3227 (48% response rate) l No significant differences in answers based on oncology specialty l 6,645 oncologists surveyed l 118 questions l n = 3227 (48% response rate) l No significant differences in answers based on oncology specialty

26. Source of information about palliative care l 90% Trial and Error l 73% Colleagues and role models l 38% Traumatic Experience l Message: No one is teaching this to oncologists l 90% Trial and Error l 73% Colleagues and role models l 38% Traumatic Experience l Message: No one is teaching this to oncologists

27. Inadequate education about palliative care l 81% inadequate mentor or coaching in how to discuss poor prognosis l 65% inadequate information about controlling symptoms l 81% inadequate mentor or coaching in how to discuss poor prognosis l 65% inadequate information about controlling symptoms

28. At least some influence l 97% Oncologists reluctant to ‘give up’ l 99% Patient / family demands for antineoplastic therapy l 80% Chemotherapy is reimbursable l 80% Reluctance to talk about issues other than antineoplastic therapy l 91% Takes more time to do palliative care than give antineoplastic therapy l 97% Oncologists reluctant to ‘give up’ l 99% Patient / family demands for antineoplastic therapy l 80% Chemotherapy is reimbursable l 80% Reluctance to talk about issues other than antineoplastic therapy l 91% Takes more time to do palliative care than give antineoplastic therapy

29. Personal failure l 76% feel some sense of personal failure if patient dies of cancer l 90% feel at least some anxiety discussing poor prognosis l 75% feel at least some anxiety discussing symptom control with patients and families l 76% feel some sense of personal failure if patient dies of cancer l 90% feel at least some anxiety discussing poor prognosis l 75% feel at least some anxiety discussing symptom control with patients and families

30. Unrealistic expectations l 29% Patient l 50% Family l 27% Conflict l 29% Patient l 50% Family l 27% Conflict

31. Professional satisfaction l 98% some emotional satisfaction to provide palliative care l 92% some intellectual satisfaction to provide palliative care l Marked contrast with preparation and a cause for optimism l 98% some emotional satisfaction to provide palliative care l 92% some intellectual satisfaction to provide palliative care l Marked contrast with preparation and a cause for optimism

32. Goals of EPEC-O l Practicing oncologists l Core clinical skills l Improve competence, confidence patient - physician relationships Patient / family satisfaction physician satisfaction l Not intended to make every oncologist a palliative care expert l Practicing oncologists l Core clinical skills l Improve competence, confidence patient - physician relationships Patient / family satisfaction physician satisfaction l Not intended to make every oncologist a palliative care expert

33. EPEC-O curriculum... l Whole patient assessment l Communication of diagnosis and prognosis l Goals of care, treatment priorities l Advance care planning l Whole patient assessment l Communication of diagnosis and prognosis l Goals of care, treatment priorities l Advance care planning

34. ... EPEC-O curriculum... l Symptom management l Preventing Burnout l Cancer Survivorship l Physician-assisted suicide / euthanasia l Symptom management l Preventing Burnout l Cancer Survivorship l Physician-assisted suicide / euthanasia

35. ... EPEC-O curriculum... l Withholding and withdrawing Rx Hydration and Nutrition l Care in the last hours of life l Grief and bereavement support l Withholding and withdrawing Rx Hydration and Nutrition l Care in the last hours of life l Grief and bereavement support

36. ... EPEC-O curriculum... l How to teach l Models of palliative care l Next steps to improve palliative care care in cancer l Interdisciplinary teamwork l How to teach l Models of palliative care l Next steps to improve palliative care care in cancer l Interdisciplinary teamwork

37. ... EPEC-O curriculum l Apply each skill in your practice l Eenhance professional satisfaction l Foster creative approaches to create change in cancer care Change will not be effective without oncologists l Apply each skill in your practice l Eenhance professional satisfaction l Foster creative approaches to create change in cancer care Change will not be effective without oncologists

38. EPECEPECOOEPECEPECOOO EPECEPECOOEPECEPECOOO Summary Gaps need to be filled so that palliative care becomes an essential and inextricable part of comprehensive cancer care Summary