Palliative Care: It’s About How You Live

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

2. Learning Objectives • Describe the history and growth of Palliative Care • Define Palliative Care, including the similarities and differences with Hospice Care • Identify clinical triggers for palliative care assessment

3. What’s the Problem? Why is this important to know?

4. 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. 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. 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. 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. End of Life in America today • Modern healthcare • Relatively few cures • Live much longer with chronic illness • Dying process also prolonged

9. 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. 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. 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. Site of Death Hospitals: 56% Nursing homes: 19% Home: 21% Other: 4% (1998 National Mortality Followback Survey)

13. 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. Leading Causes of Death- 2004 1. Diseases of the heart 27.2% 2. Malignant neoplasms 23.1% 3. Cerebrovascular diseases 6.3% 4. Chronic lower respiratory diseases 5.1% 5. Accidents 4.7% 6. Diabetes mellitus 3.1% 7. Alzheimer’s disease 2.8% 8. Influenza and pneumonia 2.5% 9. Nephritis, nephrotic syndrome and nephrosis 10. Septicemia http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56_05.pdf

15. Prognosis Lorenz, K. A. et. al. Ann Intern Med 2008;148:147-159

16. Prognosis Lorenz, K. A. et. al. Ann Intern Med 2008;148:147-159

17. Prognosis Lorenz, K. A. et. al. Ann Intern Med 2008;148:147-159

18. 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. 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. 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. 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. Hospice Care Life Prolonging Care Life Prolonging New Hospice Care Care Bereavement Palliative Care Diagnosis Death Conceptual Shift Old Bereavement

23. 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. 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. 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 Comparing Hospice vs. Palliative Care

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. 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. 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 >75% of All Hospitals with >300Beds >50% of AllHospitals Goldsmith et al, J Palliat Med, 2008, AHA Annual Hospital Survey, 2009

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

32. Growth of Palliative Medicine Physicians (AAHPM Membership) Actual Projected

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

34. Growth of Annual AAHPM/HPNA Meeting Attendance HPNA Actual Preliminary

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

37. 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. 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. 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 CareDistribution of Total Medicare Beneficiaries and Spending, 2005 Average per capita Medicare spending (FFS only): $7,064 Average per capita Medicare spending among top 10% (FFS only): $44,220 Total Number of FFS Beneficiaries: 37.5 million Total Medicare Spending: $265 billion 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. Capturing a larger audience

42. Admission Assessment

43. 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 • 3rd admission within 90 days • Any other condition where you would “not be surprised” if patient died within 6 months

44. 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. 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. Resources Center to Advance Palliative Care, www.capc.org National Hospice and Palliative Care Organization, www.nhpco.org American Academy of Hospice and Palliative Medicine, www.aahpm.org Hospice and Palliative Nurses Association, www.hpna.org National Association of Social Workers (CHP-SW, ACHP-SW), http://www.naswdc.org/credentials/credentials/chpsw.asp