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Palliative Care as a Public Health Issue

Palliative Care as a Public Health Issue

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Palliative Care as a Public Health Issue

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  1. Palliative Care as a Public Health Issue Dr. Kathleen M. Foley Budapest October, 2003

  2. Palliative Care as a Public Health Issue • affects all people • need for better information on end-of-life care • potential to prevent suffering • potential to prevent disease

  3. Palliative Care as a Prevention Model • prevents needless suffering • provide peer education • provides patient centered care • incorporate self-management programs

  4. 1982 WHO Definition of Palliative Care “The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount. The goal of palliative care is the achievement of the best quality of life for patients and families.”

  5. 2002 WHO Definition of Palliative Care "Palliative care is an approach which improves quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual"

  6. Integrating Palliative Care into Public Health For whom? when? where? at what cost?

  7. Integrating Palliative Care into Public Health • For whom? -the dying -prognosis<6 months -the chronically ill -intensity of symptoms, burden of disease -those likely to die in one year

  8. Prognostication

  9. Trajectory of Death Lynn, et al., 1995

  10. Medical Problems and Suffering in Last Month 100 Occurrence 80 Suffering Percent 60 40 20 0 Diarrhea Pain Seizures Dyspnea Constipation Loss of Energy Fever/Infection Loss of Appetite Nausea/Vomiting

  11. Integrating Palliative Care into Public Health • Where? -at home -in hospitals -in chronic care facilities -in hospices -in prisons

  12. Dying in America • About 2.4 million people die each year in the U.S. of these: • About 50% die in acute care facilities • Another 20% die in long term care • About 25% die at home • The remainder elsewhere including DOA

  13. Dying in America • According to the Dartmouth Atlas, whether you die in a hospital is directly related to the proportion of hospital beds to the population. The more hospital beds in your region, the more likely you will die in a hospital.

  14. Hospice Care in America • 3100 operating hospice services in US - Includes multiple sites • In 2000 approximately 700,000 admissions to US hospices • Approximately 600,000 deaths under hospice care or 25% of all deaths in the US (more than half of all cancer deaths)

  15. Hospice Care in America • 80% of hospice patients are over 65 years • The 2000 average length of hospice care is 48 days but a more accurate measure is The median length of service of 25 days • 34% of hospice patients are served less than 7 days and 6% of patients more than 180 days

  16. Integrating Palliative Care into Public Health • When? -last days of life -last weeks of life -last months of life -last year of life

  17. Integrating Palliative Care into Public Health • At What Cost? Cost to whom? -patient -family -healthcare system

  18. Integrating Palliative Care into Public Health • At What Cost? -financial -social -psychological

  19. Toolkit of Instruments to Measure End of Life Care • http://www.chcr.brown.edu/pcoc/tookit.htm Teno, 1999

  20. Five Key Domains for MeasurementTeno et. al, 2000 symptom management shared decision making patient satisfaction coordination of care continuity of care

  21. Domains for Quality End-of-Life HealthcareLunney, et al., 2002 • management of symptoms • spiritual and personal growth • familiar setting surrounded by loved one

  22. Domains for Quality End-of-Life HealthcareLunney, et al., 2002 • understandable information to guide decision making and planning • confidence that one will not be a financial, emotional or physical burden • right of self-determination and control of treatment choices

  23. National Hospice and Palliative Care OrganizationKey Domains • self determined life closure • safe and comfortable dying • effective grieving

  24. A Report on Dying in America Today RWJ Foundation Last Acts

  25. Report Card on Palliative Care Report Card Measures • What population of deaths occur at home • Is hospice care widely used in the country 3. Do hospitals offer pain and palliative care services

  26. Report Card on Palliative Care Report Card Measures 4. Do government policies support good advance care planning 5. How many elderly people spend a week or more in intensive care units during the last six months of life

  27. Palliative Care in Resource Poor Settings Process Measures Drug Availability Education Government Policy

  28. 6,262,721 people around the world died of cancer in the year 2000 Northern Europe 638,163 Eastern Europe 245,234 North America 635,978 Japan 518,737 Western Europe 483,648 Southern Europe 342,468 Eastern Asia 1,752,166 Northern Africa and Western Asia 203,525 South Central Asia 800,211 South-Eastern Asia 337,693 South America and the Caribbean 458,703 Sub Saharan Africa 316,291 Oceania 48,641 Percentage of deaths caused by cancer Globocan 2000 IARC

  29. Burden of Cancer, HIV/AIDS, and Numbers of Patients in Need of Palliative Care 1 Numbers of patients in need of palliative care are estimated from cancer and HIV/AIDS deaths plus 2% deaths from other chronic, life-threatening conditions.

  30. UNAIDS Report • 40 million living with HIV/AIDS -28.5 million in sub saharan Africa • 14 million orphans worldwide -11 million in sub saharan Africa • 20 million have died since 1981

  31. http://hab.hrsa.gov/tools/palliative/

  32. Diagnosis Dying Death Person with Illness Support services for families and caregivers Family Caregivers DISEASE PROGRESSION Integrated Model Including both Curative and Palliative Care for Chronic Progressive Illness Curative Care (=disease-specific, restorative) Bereavement Palliative Care (=supportive, symptom oriented)

  33. Challenges for Palliative Care for AIDS in Resource-Poor SettingsSelwyn, 2003 • Obtaining access to HIV specific therapies (e.g., HAART) • Obtaining access to palliative care therapies (e.g., opioids) • Prioritizing HIV services in context of limited resources (e.g., primary prevention, perinatal transmission, targeted population-based HAART, care for the dying)

  34. Challenges for Palliative Care for AIDS in Resource-Poor SettingsSelwyn, 2003 • Providing effective palliative care services that do not ‘normalize’ a two-tiered system of care (i.e., ‘HAART for the rich and opioids for the poor’) • Linkage of palliative care services to existing and traditional care systems

  35. WHO Community Health Approach to Palliative Care for HIV and Cancer Patients in Africa Model Initiative in Providing Palliative Care • Uganda Ministry of Health included palliative care in its National Health Sector Strategic Plan • Uganda developed and funded an essential drug program and changed restrictive laws to allow oral morphine in home-based settings

  36. Palliative Care in Resource Poor Settings Uganda supports • Hospice Uganda-resource training center for community and home based palliative care • Mildmay Center for palliative/HIV care in Kampala

  37. Model Initiatives in Palliative Care in South Africa HASA developed integrated community based home care models (ICBHBC)

  38. HIV/AIDS in our area... • In the Masoyi Tribal Area (Northern Nzikazi) 250,000 people live with a prevalence of nearly 30% of the sexually active population infected by HIV • At least 25,000 people are infected with HIV • About 4,200 are living with AIDS

  39. HIV/AIDS in our area... • 600 patients a year will be needing terminal care • 10% to 40% of those will be needing Hospice care • At least 30% of Pregnant Mothers are HIV positive and one in three of their babies will also be HIV positive

  40. Palliative Care at Home... Dr Margie Hardman, also the director of ACTS, also consults patients in their homes when they are unable to attend the clinic Many patients who need palliative care at home live far off the beaten track and can only be reached by carers walking to their homes

  41. How Much Palliative Care is Enough A Way Forward • develop a monitoring system for palliative care to interface with the European Observatory • develop a research infrastructure