1. EPECEPEC Elements and Gaps in End-of-life Care Plenary 1 The Education in Palliative and End-of-life Care program at Northwestern University Feinberg School of Medicine, created with the support of the American Medical Association and the Robert Wood Johnson Foundation

2. Objectives Understand dying in America What we want What we get Barriers to care Elements of care Hospice care Palliative care Concepts of suffering Introduce the EPEC Curriculum

3. How Americans died in the past Early 1900s average life expectancy 50 years childhood mortality high adults lived into their 60s Prior to antibiotics, died quickly Medicine focused on caring, comfort Sick cared for at home (cultural variations)

4. Medicine’s shift in focus... Science & technology Marked shift in values & focus of North American society Values productivity, youth, independence Devalues age, family, interdependent caring

5. … Medicine’s shift in focus … Improved sanitation, public health, antibiotics, other new therapies Increased life expectancy 1995 avg 76 y (F: 79 y; M: 73 y) 2009 avg 78 y (F: 81 y; M: 76 y)

6. … Medicine’s shift in focus Potential of medical therapies “fight aggressively” against illness, death prolong life at all cost Death “the enemy” organizational promises sense of failure if patient not saved

7. Place of death 90% of respondents to the National Hospice Organization Gallup survey wanted to die at home Death in institutions 1949 – 50% of deaths 1958 – 61% 2000 – 75% 50% in hospitals 25% in nursing homes 25% home

8. Sudden death, unexpected cause < 10%, MI, accident, etc Death Time Health Status

9. Steady decline, short terminal phase

10. Slow decline, periodic crises, sudden death

11. … Barriers to end-of-life care Social factors Lack of exposure Fear, discomfort Culture of denial Importance not recognized Training, funding Coordination Lack of skill Discomfort managing complex issues Symptoms Communication Delayed introduction of care Increasingly complex medical care

12. Role of hospice, palliative care... Hospice started in U.S. in late 1970’s Percentage of total U.S. deaths in hospice 11% in 1993 17% in 1995 25% in 2000 39% in 2009

13. Continuum of care Hospice Disease-modifying therapy (curative, life prolonging, or palliative in intent) Bereavement care Presentation/Diagnosis Death Illness Bereavement

14. Hospice Benefit Specialized services for the last 6 months of life Focus on quality of life, symptom management Includes care of the family before and after death Includes medication, equipment, respite care

15. The Hospice Team Chaplain Social worker Medical director Volunteers Nursing care CNA Bereavement counselor

16. Hospice levels of care Routine care General inpatient care Continuous care Respite care

17. … Role of hospice, palliative care … Median length of stay remains low 36 days in 1995 (16% < 7 days LOS) 20 days in 1998 26 days in 2005 (30% < 7 days LOS)

18. The problem with hospice Misunderstood By public By professionals Negative associations Death/giving up The 6 month rule Restrictions on expensive care Advanced life prolonging therapies may also be palliative People forced to choose between needed services Care and comfort Beneficial advanced therapies

19. The problem with hospice The 6 month rule Restrictions on expensive care Advanced life prolonging therapies may also be palliative People forced to choose between needed services Care and comfort Beneficial advanced therapies Reliance on family caregivers

20. Continuum of care Hospice Disease-modifying therapy (curative, life prolonging, or palliative in intent) Bereavement care Symptom control, supportive care Presentation/Diagnosis Death IllnessBereavement

21. … Role of hospice, palliative care Palliative care programs earlier symptom management supportive care expertise possible impact on life expectancy Specialty palliative care Primary palliative care

22. Palliative care – IOM “Palliative care seeks to prevent, relieve, reduce, or soothe the symptoms of disease or disorder without effecting a cure…. Palliative care in this broad sense is not restricted to those who are dying or those enrolled in hospice programs….It attends closely to the emotional, spiritual, and practical needs and goals of patients and those close to them.” - Institute of Medicine, 1998

23. Palliative care – CAPC Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness illness - whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

24. Palliative care – CAPC Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.

25. Goals of EPEC Practicing clinicians Core clinical skills Improve competence, confidence patient-physician relationships patient / family satisfaction clinician satisfaction Not intended to make every clinician a palliative care expert

26. EPEC Curriculum … Whole patient assessment Communicating difficult news Goals of care Advance care planning

27. … EPEC Curriculum … Symptom management Pain management Depression, anxiety, delirium Other physical symptoms Psychosocial issues

28. EPEC Curriculum … Medical futility Withholding, withdrawing life-sustaining treatments Last hours of living

29. … EPEC Curriculum … Sudden illness Hastened death Legal issues Loss, grief and bereavement Cultural issues Family issues Depression and delirium Professional self care

30. … EPEC Curriculum … Questions?....