1. Palliative Care: It’s About How You Live R. Morgan Bain, M.D. Medical Director, WFUBMC Palliative Care Program March 15, 2011

2. Wake Forest University Baptist Medical Center Learning Objectives 1.Describe the history and growth of Palliative Care 2.Define Palliative Care, including the similarities and differences with Hospice Care 3.Identify clinical triggers for palliative care assessment

3. Wake Forest University Baptist Medical Center What’s the Problem? Why is this important to know?

4. Wake Forest University Baptist Medical Center End of Life in America The end of a person’s life can be one of the most important times in that life Some die easily and comfortably Others die with a great deal of suffering and distress Neither our society nor modern medicine has valued end-of-life care, or trained health care professionals to be competent or confident in it

5. Wake Forest University Baptist Medical Center History Lessons: How Americans Died in the Past… Early 1900s Average life expectancy ~ 50 years Childhood mortality high Adults lived into their 60s Prior to antibiotics, people died quickly Infectious disease Accidents Medicine focused on comfort and caring! Sick cared for at home

6. Wake Forest University Baptist Medical Center Medicine’s shift in focus… Science, technology, communication Marked shift in values, focus of North American society “death denying” Value productivity, youth, independence Devalue age, family, interdependent caring

7. Wake Forest University Baptist Medical Center Medicine’s shift in focus… Potential of medical therapies “fight aggressively against illness, death” Prolong life at all cost Improved sanitation, public health, antibiotics, other new therapies Increasing life expectancy (now 77.9 yrs) Death “the enemy” Sense of failure if the patient not saved

8. Wake Forest University Baptist Medical Center End of Life in America today Modern healthcare Relatively few cures Live much longer with chronic illness Dying process also prolonged

9. Wake Forest University Baptist Medical Center Symptoms, suffering… Fears, fantasy, worry Driven by experience Media dramatization Multiple physical symptoms Inpatients with cancer averaged 13.5 symptoms, outpatients 9.7 Greater prevalence with AIDS Related to Primary illness Adverse effects of medications, therapy Intercurrent illness

10. Wake Forest University Baptist Medical Center Symptoms, suffering… Multiple physical symptoms Many previously little examined Pain, nausea/vomiting, constipation, breathlessness Weight loss, weakness/fatigue, loss of function Psychological distress Anxiety, depression, worry, fear, sadness, hopelessness, etc. 40% worry about “being a burden”

11. Wake Forest University Baptist Medical Center Place of death… 90% of respondents to WHO Gallup survey want to die at home Death in institutions 1949 – 50% deaths 1958 – 61% 1980 to present – 74%

12. Wake Forest University Baptist Medical Center Site of Death Hospitals: 56% Nursing homes: 19% Home:21% Other: 4% (1998 National Mortality Followback Survey)

13. Wake Forest University Baptist Medical Center Place of death… Majority of institutional deaths could be cared for at home Death is the expected outcome Generalized lack of familiarity with dying process, death

14. Wake Forest University Baptist Medical Center Leading Causes of Death- 2004 1. Diseases of the heart 27.2% 2. Malignant neoplasms23.1% 3. Cerebrovascular diseases6.3% 4. Chronic lower respiratory diseases5.1% 5. Accidents4.7% 6. Diabetes mellitus3.1% 7. Alzheimer’s disease2.8% 8. Influenza and pneumonia2.5% 9. Nephritis, nephrotic syndrome and nephrosis 10. Septicemia http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56_05.pdf

15. Wake Forest University Baptist Medical Center Prognosis Lorenz, K. A. et. al. Ann Intern Med 2008;148:147-159

16. Wake Forest University Baptist Medical Center Prognosis Lorenz, K. A. et. al. Ann Intern Med 2008;148:147-159

17. Wake Forest University Baptist Medical Center Prognosis Lorenz, K. A. et. al. Ann Intern Med 2008;148:147-159

18. Wake Forest University Baptist Medical Center Better Care Needed From the Day of Diagnosis of Any Serious Illness People need better care throughout the multi-year course of advanced illness. Medicare Hospice Benefit developed to care for the dying: payment regulations require 6 month prognosis and decision to forego insurance coverage for life prolonging care. Additional approaches are needed for much larger numbers of persons with chronic, progressive illness, years to live, continued benefit from disease modifying therapy, and obvious palliative care needs.

19. Wake Forest University Baptist Medical Center The Nature of Suffering and the Goals of Medicine The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians’ failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself. Cassell, Eric NEJM 1982;306:639-45.

20. Wake Forest University Baptist Medical Center Barriers to End-of-Life care Lack of acknowledgment of importance Introduced late, funding inadequate Fear of addiction, exaggerated risk of adverse effects Restrictive legislation Discomfort communicating “bad” news, prognosis Lack of skill negotiating goals of care, treatment priorities Futile therapy

21. Wake Forest University Baptist Medical Center Palliative Care Defined Palliative care is the medical specialty focused on improving the quality of life of people facing serious illness. Emphasis is placed on pain and symptom management, communication and care coordination. Palliative care is appropriate from the time of diagnosis and can be provided along with curative treatment.

22. Conceptual Shift Hospice Care Hospice Care Life Prolonging Care Old Palliative Care Bereavement Hospice Care Life Prolonging Care New DiagnosisDeath Bereavement

23. Wake Forest University Baptist Medical Center Hospice “Hospice programs provide palliative care to terminally ill patients and supportive services to their families and significant others, 24 hours a day, 7 days a week, in both home- and facility-based settings. Physical, social, spiritual, and emotional care is provided during last stages of illness, during the dying process, and during bereavement by a medically directed interdisciplinary team consisting of patients/families, professionals, and volunteers.” -National Hospice Organization

24. Wake Forest University Baptist Medical Center What Is Hospice? A reimbursement benefit for patients who have a limited prognosis or life expectancy Primarily community-based Care for severely ill patients and their families Team of professionals and trained volunteers Focus is on care, not cure. Goals: Relief of pain and other symptoms Psycho-social support

25. Comparing Hospice vs. Palliative Care Hospice Prognosis of 6 months or less Focus on comfort care Medicare hospice benefit Volunteers integral and required aspect of the program Palliative Care Any time during illness May be combined with curative care Independent of payer Health care professionals

26. BEGINNINGS Dame Cicely Saunders, (6/22/18 – 7/14/05) Founder of modern Hospice movement Introduced effective pain management Largely responsible for establishing the discipline and the culture of Palliative Care

27. Wake Forest University Baptist Medical Center Palliative Care Timeline 1967- St. Christopher’s Hospice founded in London 1980’s World Health Organization advocates for pain and symptom management 1988- Academy of Hospice Physicians, later AAHPM 1994- Project on Death in America 1995- SUPPORT trial published 1996- American Board of Hospice and Palliative Medicine 1999- Educating Physicians on End-of-Life Care (EPEC) 2003- Center for Advancing Palliative Care (CAPC) introduces Palliative Care Leadership Centers September 2006- American Board of Medical Specialties certifies Palliative Care

28. Wake Forest University Baptist Medical Center Hospital-based palliative care: Rapid growth  Number of U.S. hospitals: ~ 7000  1999: 337 hospital based palliative care programs in the U.S. (AHA annual survey and Pan et al + Billings et al JPM 2001;4:315.)  2003: >1089 hospital based palliative care programs in the U.S. (AHA annual survey), 300% increase  Center to Advance PC  RWJF initiative at Mt. Sinai  Particularly at Academic Medical Centers  The “educational imperative”

29. Growth of Patients Enrolled In Hospice >40% of Deaths

30. Growth of Non-Hospice Palliative Care Programs Goldsmith et al, J Palliat Med, 2008, AHA Annual Hospital Survey, 2009 >50% of All Hospitals >75% of All Hospitals with >300 Beds

31. Source: Center to Advance Palliative Care, January 2011

32. Growth of Palliative Medicine Physicians (AAHPM Membership) ProjectedActual

33. Hospice and Palliative Nurses Association (HPNA) Membership Growth ProjectedActual

34. Growth of Annual AAHPM/HPNA Meeting Attendance HPNA PreliminaryActual

35. A Decade Later: Palliative Care 2011 Dramatic increase in the number of clinical palliative care and hospice programs Increasing public and professional awareness of palliative care Recognition of palliative care as a distinct medical and nursing specialty Enhanced professional training and educational efforts in palliative care Increasing research evidence of the benefit of palliative and hospice care Major quality and policy initiatives: National Quality Forum, CMS

36. Delivery of Palliative Care Hospital-Based -Primary care -Consultation -In-Patient Unit Nursing Home Hospice -Home Hospice -Hospital In-Patient -Hospice In-Patient

37. Wake Forest University Baptist Medical Center Domains of Palliative Care Whole patient assessment Communication of bad news Goals of care, treatment priorities Advance care planning Symptom management Sudden critical illness

38. Wake Forest University Baptist Medical Center Domains of Palliative Care Medical futility Physician assisted suicide/euthanasia Withholding or withdrawing life sustaining therapy Care in the last hours of life, bereavement support

39. Wake Forest University Baptist Medical Center Domains of Palliative Care Legal issues Models of end-of-life care Goals for change, barriers to improving end-of- life care Interdisciplinary teamwork

40. Target Population for Palliative Care Distribution of Total Medicare Beneficiaries and Spending, 2005 Total Number of FFS Beneficiaries: 37.5 million Total Medicare Spending: $265 billion Average per capita Medicare spending (FFS only): $7,064 Average per capita Medicare spending among top 10% (FFS only): $44,220 NOTE: FFS is fee-for-service. Includes noninstitutionalized and institutionalized Medicare fee-for-service beneficiaries, excluding Medicare managed care enrollees. SOURCE: Kaiser Family Foundation analysis of the CMS Medicare Current Beneficiary Survey Cost & Use file, 2005.

41. Wake Forest University Baptist Medical Center Capturing a larger audience

42. Wake Forest University Baptist Medical Center Admission Assessment

43. Wake Forest University Baptist Medical Center WFUBMC ICU Triggers for PC Age > 80 Metastatic or locally advanced cancer Nursing home admission Chronic renal failure on outpatient HD Repeat admission, same hospitalization Repeat admission within 30 days 3 rd admission within 90 days Any other condition where you would “not be surprised” if patient died within 6 months

44. Wake Forest University Baptist Medical Center WFUBMC PC in the ICU Make PC a regular part of ICU team (Tues. AM mtgs.) Screen all patients Review patients that meet screen Discuss with team Determine level of involvement with ICU team Just Coordinator On to full consult with PC Physician No PC involvement Arrange/participate in Family Conference

45. Wake Forest University Baptist Medical Center What does our PC Coordinator do in the MICU? Meet with Attending or Fellow for daily updates Circulate during visiting hours “Here to be sure we’re doing the things they’d want, and not…” Ask about Advance Directives (often the first to ask) Participate in/arrange family conference Staff support – difficult cases and withdrawals Resource for symptom management

46. Clarity and Consistency of Language Palliative care is about matching treatment to (achievable) patient goals, whatever they may be.

47. Wake Forest University Baptist Medical Center Resources 1.Center to Advance Palliative Care, www.capc.orgwww.capc.org 2.National Hospice and Palliative Care Organization, www.nhpco.org www.nhpco.org 3.American Academy of Hospice and Palliative Medicine, www.aahpm.orgwww.aahpm.org 4.Hospice and Palliative Nurses Association, www.hpna.org www.hpna.org 5.National Association of Social Workers (CHP-SW, ACHP-SW), http://www.naswdc.org/credentials/credentials/chpsw. asp http://www.naswdc.org/credentials/credentials/chpsw. asp