A Brief History of Palliative Care

1. A Brief History ofPalliative Care David L. Sharp, M.D. Grand Rapids Medical Education Partners Hospice of Michigan – Grand Rapids

2. David L. Sharp, M.D. – brief bio • B.S./M.D. - University of Pittsburgh • pilot program - Family Medicine, Flemington, NJ • moved to Grand Rapids in 1986 when daughter Martie matriculated at Hope College • Board Certified in Family Medicine and Hospice and Palliative Care • spiritual gift: mercy • Inpatient Physician – Trillium Woods - 2007-2009 • Medical Director – Hospice of Michigan – Grand Rapids - 2010 to present

4. our goals today… • reach a better understanding of: • how far back “palliative care” reaches • some historical landmarks along the way • recent history: compassion pushes back against technology • palliative care today – Economics 301- the future of palliative care • meet the art of Deidre Scherer

6. one of the ironies of life: By the time you’re old enough to know your way around, you’re not going anywhere.

7. Palliative Care is not exactly a new concept… “Cure sometimes, treat often, comfort always.” Hippocrates 460-357 B.C.

8. Ancient China • special houses – “death houses” • destitute people were allowed to go there to live and die

9. New Zealand • Maoris tribe • family of dead person is given support in all possible ways • entire tribe joins in mourning

10. East Africa • Tribal elders offer spiritual and practical support to the dying person and their family

11. a rest along the way… • During the Crusades in the Middle Ages, monasteries provided care for • the sick and dying • the hungry wayfarer • the woman in labor • the needy poor • the orphan • the leper

12. Middle Ages • Religious orders established “hospices” at key crossroads on the way to religious shrines • Santiago de Compostela (Spain) • Chartres (France) • Rome (Italy) • ironically, people died in these shelters while on pilgrimages seeking cures for their diseases

14. 16th – 18th centuries • religious orders offered care of the sick and dying in local or regional institutions • but – most people died at home, care for by the women in their families

15. 17th Century • A young priest, St. Vincent de Paul, founded the holy order of Sisters of Charity in Paris, 1633 • They, in turn, opened more than 40 houses for the poor, the sick, the dying • motto: “The charity of Christ impels us”

16. 1800’s • Madame Garnier of Lyon, France, opened a “calvaire” to care for dying • 1879 – Our Lady’s Hospice – Dublin – cares only for the dying • By late 19th century, increase in municipal or charitably-financed infirmaries, almshouses and hospitals begins the “medicalizing” of dying

17. 1900 • Five of the Irish Sisters of Charity founded St. Joseph’s Convent, London • Began visiting the sick in their homes

18. 1935 • Interest grows in the psycho-social aspects of dying and bereavement, sparked by the work of Worcester, Bowlby, Lindemann, Hinton, Kubler-Ross, Raphael, Worden and others

19. Europe and USA • Up until 19th century, belief was that the family and church should be responsible for the dying person and also help loved ones cope with situation

20. Mid-20th century • The expansion of medical knowledge, fueled by wartime experiences, results in almost 80% of people dying in hospitals or a nursing home

21. 1957 - 1967 • Cicely Saunders – first a social worker, then a nurse and finally a physician • Works at St. Joseph’s Hospice studying pain control in advanced cancer patients • Pioneered concept of opioids “given by the clock” instead of as “prn” pain control

22. Dame Cicely Saunders 1918-2005 • nurse, physician, founder of St. Christopher’s Hospice, Sydenham, south London, 1967 • “No human life, now matter how wretched, should be denied dignity and love.”

23. Dr. Cicely Saunders “We need to help the dying to live until they die and their families to live on…” • Author of three books on hospice care: • “Care of the Dying,” 1960 • “The Management of Terminal Disease,” 1978 • “Living with Dying,” 1983

24. 1967 • Dr. Saunders opens St. Christopher’s Hospice in London • Emphasized multi-disciplinary approach to caring for dying • Regular use of opioids • Careful attention to social, spiritual and psychological suffering of patients and their families

26. 1974 - New Haven, Connecticut • Nurses “carry the banner” from London to America and begin teaching Dr. Saunders’ principles • New Haven Hospice in Branford begins caring for patients with cancer, A.L.S. and other fatal illnesses

28. Canada -1975 • Dr. Balfour Mount – founds hospice and palliative care work in two North American hospital facilities • St. Boniface Hospital - Winnipeg • Royal Victoria Hospital - Montreal

29. British Columbia - 1978 • Victoria Hospice founded as “The Victoria Association for Care of the Dying” • pilot program successful – became Hospice Victoria 1982 • began with 7 acute-care beds in Royal Jubilee Hospital

31. 1975 - 1978 • Hospices and palliative care units open across USA • California • Support team at St. Luke’s in NYC • Church Hospice – Baltimore • Cleveland Clinic • Medical College of Wisconsin

32. 1984 • Congress adds Hospice Benefit

33. 2009 • Most recent financial data shows: • 11,633 home health agencies • 3,533 hospices Center for Medicare & Medicaid Services, OSCAR data, April, 2011

34. 2009 – USA hospice care • USA stats • 1,123,495 covered patients • 77,822,892 covered days of care • $12 billion reimbursement ($12,085,785,062.15) Source: CMS OSCAR data, April, 2011

36. 2009 – Michigan • 607 home health agencies • 104 hospices • 41,918 total hospice patients • 2,477,382 covered hospice days • $378,947,823.67 hospice reimbursement CMS OCSAR data, April, 2011

38. Philosophy before function • Palliative care (symptomatic and supportive care) is generally withheld until all attempts to treat the underlying disease and other medical problems are exhausted; many times palliative care is offered with little time left for living.

39. Philosophy before function 2 • Palliative care should be considered in conjunction with active treatment, and, as death nears, palliative care becomes more important as active treatment, while cure becomes less important

40. Philosophy before function 2 • Palliative care should be considered in conjunction with active treatment, and, as death nears, palliative care becomes more important as active treatment, while cure becomes less important

42. Modern definition • Advanced knowledge/skills to prevent and relieve suffering experienced by patients with life-limiting, life-threatening and terminal illnesses. • Expertise in assessment of patients with advanced disease and catastrophic injury

43. Modern definition 2 • Coordination of interdisciplinary patient and family-centered care in diverse settings • Use of specialized care systems including hospice, management of the imminently dying patient and legal and ethical decision making in end-of-life care

44. Modern definition 3 • Work with an interdisciplinary hospice or palliative care team to maximize quality of life while addressing physical, psychological, social and spiritual needs of both patients and family members thru illness, dying and bereavement

46. Drivers of palliative care • Sheer demographics – growth of elder population with diseases of senescence • Conventional medicine – enabling younger patients with previously-fatal diseases to survive longer • Emerging infectious diseases (HIV-AIDS, hep C, resurgent tbc, etc.)

48. U.S.A. Demographics I • over-65 age group will double between 2000 and 2030 • over 70 million >age 65 by 2030 • >age 85: 4.2 million in 2000 to 8.9 million in 2030 • by 2050 we will may well have 834,000 persons over 100 years old

49. U.S.A. Demographics II • we post-moderns tend to think of “death” as an option rather than a reality; however… • roughly 100% of Americans are expected to die at the end of their lifetimes.

50. What is “Futile care?” • use of expensive technology to prolong the natural dying process of terminally ill persons, with no realistic expectation of longer survival, clinical improvement or better quality of life