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The EPEC-O Project Education in Palliative and End-of-life Care - Oncology

TM. The EPEC-O Project Education in Palliative and End-of-life Care - Oncology. 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.

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The EPEC-O Project Education in Palliative and End-of-life Care - Oncology

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

  2. EPEC - Oncology Education in Palliative and End-of-life Care - Oncology Plenary 1: Gaps in 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 • Describe the current cancer incidence, prevalence, and mortality • Describe suffering associated with cancer • Define palliative care • Identify gaps in cancer care • Introduce the EPECTM-O Curriculum

  5. Video

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

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

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

  9. Patient/family transitions

  10. Symptoms, suffering . . . • 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 . . . • Multiple physical symptoms • 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 • Psychological distress • anxiety, depression, worry, fear, sadness, hopelessness, etc. • 40% worry about “being a burden” • Covinsky KE, et al. JAMA. 1994

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

  14. Caregiving • 90% of Americans believe it is a family responsibility • In a 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 • 20% of family members quit work to provide care • Financial devastation • 31% lost family savings • 40% of families became impoverished • SUPPORT. JAMA. 1995

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

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

  18. . . . Place of care • Majority of institutional admissions could be avoided • Generalized lack of familiarity with addressing suffering and quality-of-life issues

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

  20. Public expectations • 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 • Population-based survey of patients at home • 98% had confidence in their physicians • No differences between managed care and fee-for-service • Slutsman J, et al. JAGS. 2003

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

  23. Conventional cancer care Medicare Hospice Benefit Antineoplastic Therapy Presentation 6m Death BereavementCare

  24. Comprehensive cancer care Antineoplastic Therapy Palliative Care Presentation 6m Death Symptom Rx Relieve Suffering BereavementCare

  25. 1998 ASCO survey • 6,645 oncologists surveyed • 118 questions • n=3,227 (48% response rate) • No significant differences in answers based on oncology specialty

  26. Source of information about palliative care • 90% trial and error • 73% colleagues and role models • 38% traumatic experience • Message: No one is teaching this to oncologists.

  27. Inadequate education about palliative care • 81% inadequate mentor or coaching in discussing poor prognosis • 65% inadequate information about controlling symptoms

  28. At least some influence • 97% oncologists reluctant to “give up” • 99% patient/family demands for antineoplastic therapy • 80% chemotherapy is reimbursable • 80% reluctance to talk about issues other than antineoplastic therapy • 91% takes more time to do palliative care than give antineoplastic therapy

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

  30. Unrealistic expectations • 29% patient • 50% family • 27% conflict

  31. Professional satisfaction • 98% feel some emotional satisfaction in providing palliative care • 92% feel some intellectual satisfaction in providing palliative care • Marked contrast with preparation and a cause for optimism

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

  33. EPECTM-O Curriculum . . . • Whole-patient assessment • Communication of diagnosis and prognosis • Goals of care, treatment priorities • Advance care planning

  34. . . . EPECTM-O Curriculum . . . • Symptom management • Burnout prevention • Cancer survivorship • Physician-assisted suicide/euthanasia

  35. . . . EPECTM-O Curriculum . . . • Withholding and withdrawing Rx • hydration and nutrition • Care in the last hours of life • Grief and bereavement support

  36. . . . EPECTM-O Curriculum . . . • How to teach • Models of palliative care • Next steps to improve palliative care in cancer • Interdisciplinary teamwork

  37. . . . EPECTM-O Curriculum • Apply each skill in your practice • Enhance professional satisfaction • Foster creative approaches to create change in cancer care • Change will not be effective without oncologists

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

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