Palliative Care as a Public Health Issue

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Palliative Care as a Public Health Issue

• Dr. Kathleen M. Foley
• Budapest
• October, 2003

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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

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Palliative Care as a Prevention Model

• prevents needless suffering
• provide peer education
• provides patient centered care
• incorporate self-management programs

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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.
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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"
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Integrating Palliative Care into Public Health

• For whom?
• when?
• where?
• at what cost?

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Integrating Palliative Care into Public Health

• For whom?
• -the dying -prognosislt6 months
• -the chronically ill -intensity of symptoms,
  burden of disease
• -those likely to die in one year

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Prognostication
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Trajectory of Death
Lynn, et al., 1995
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Medical Problems and Suffering in Last Month
100
Occurrence
80
Suffering
Percent
60
40
20
0
Diarrhea
Pain
Dyspnea
Seizures
Constipation
Loss of Energy
Fever/Infection
Loss of Appetite
Nausea/Vomiting
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Integrating Palliative Care into Public Health

• Where?
• -at home
• -in hospitals
• -in chronic care facilities
• -in hospices
• -in prisons

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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

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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.

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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)

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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

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Integrating Palliative Care into Public Health

• When?
• -last days of life
• -last weeks of life
• -last months of life
• -last year of life

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Integrating Palliative Care into Public Health

• At What Cost?
• Cost to whom?
• -patient
• -family
• -healthcare system

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Integrating Palliative Care into Public Health

• At What Cost?
• -financial
• -social
• -psychological

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Toolkit of Instruments to Measure End of Life Care

• http//www.chcr.brown.edu/pcoc/tookit.htm
• Teno, 1999

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Five Key Domains for Measurement Teno et. al,
2000

• symptom management
• shared decision making
• patient satisfaction
• coordination of care
• continuity of care

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Domains for Quality End-of-Life
Healthcare Lunney, et al., 2002

• management of symptoms
• spiritual and personal growth
• familiar setting surrounded by loved one

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Domains for Quality End-of-Life
Healthcare Lunney, 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

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National Hospice and Palliative Care
OrganizationKey Domains

• self determined life closure
• safe and comfortable dying
• effective grieving

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A Report on Dying in America Today RWJ
Foundation Last Acts
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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

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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

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Palliative Care in Resource Poor Settings
Process Measures
Drug Availability
Education
Government Policy
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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
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Burden of Cancer, HIV/AIDS, and Numbers of
Patients in Need of Palliative Care
Countries HIV/Aids HIV/Aids Cancer Cancer Estimated Burden of Palliative Care 1
of adults 15-49 living with HIV/ AIDS (1) No. of deaths (1) No. of incident cases (2) No. of deaths (2)
Botswana 38.8 26,000 1168 810 32,172
Ethiopia 6.4 160,000 64,657 39,920 239,904
Uganda 5.0 84,000 17,058 10,504 113,405
Tanzania 7.8 140,000 33,409 21,002 193,202
Zimbabwe 33.7 200,000 13,030 8,648 250,378
Total 610,000 129,322 80,884 829,060
UNAIDS Report on the global HIV/AIDS epidemic 2002 (2) Globocan 2000 UNAIDS Report on the global HIV/AIDS epidemic 2002 (2) Globocan 2000 UNAIDS Report on the global HIV/AIDS epidemic 2002 (2) Globocan 2000 UNAIDS Report on the global HIV/AIDS epidemic 2002 (2) Globocan 2000 UNAIDS Report on the global HIV/AIDS epidemic 2002 (2) Globocan 2000 UNAIDS Report on the global HIV/AIDS epidemic 2002 (2) Globocan 2000
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.
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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

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http//hab.hrsa.gov/tools/palliative/
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Integrated Model Including both Curative and
Palliative Care for Chronic Progressive Illness
Curative Care
(disease-specific, restorative)
Bereavement
Palliative Care (supportive,
symptom oriented)
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Challenges for Palliative Care for AIDS in
Resource-Poor Settings Selwyn, 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)

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Challenges for Palliative Care for AIDS in
Resource-Poor Settings Selwyn, 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

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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

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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

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Model Initiatives in Palliative Care in South
Africa

• HASA developed integrated community based home
  care models (ICBHBC)

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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

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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

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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
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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

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• www.eolc-observatory.net

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Integrating Palliative Care into Public Health

• A Way Forward
• ally with public health experts
• develop the qualitative and quantitative data to
  make palliative care a priority

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National Report Card Measures

• National Standards and Guidelines for pain
  management and palliative care
• Certification of health care professionals for
  pain and palliative care expertise.

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National Report Card Measures

• government policies to support pain and
  palliative care services
• government policies to assure adequate drug
  availability for managing acute, chronic,
  postoperative pain and palliative care

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Integrating Palliative Care into Public Health

• Need epidemiologic data
• Need to assess needs
• for workforce development
• -generalist
• -specialist
• Need country wide and city wide examples
• city wide example
• -London study
• Higginson, 1997