1. Palliative Care: a Key Component of Care
Liliana De Lima, MHA
Executive Director
International Association for Hospice and Palliative Care
XVII International AIDS Conference
Mexico City, August 2008

3. Prevention Early Detection Effective Treatment Palliative Care
Components of Care
Prevention
Early Detection
Effective Treatment
Palliative Care

4. What is Palliative Care?
An approach that improves the quality of life of patients and their families facing life-limiting illnesses, 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.”
WHO, 2002

5. Principles of Palliative Care
• Provides symptom control and pain treatment to improve the quality of life
Integrates psychosocial and spiritual aspects in the care plan
Offers support and help so that patients may have an active life as much as their condition allows them
Offers support and helps the family members during the disease management and progression
When and if death occurs, offers bereavement support

6. Provision of Health Care: Classical Model
Therapists
Psychologists
Soc Workers
Nurses
Specialists
Chaplain
Friends
Patient MD
Family
Nutritionists
Caregivers
Technicians
Nurse aids

7. Palliative Care Model Physicians PATIENT Nurses Nutritionists
Pharmacists
Psychologists
Physicians
FAMILY
Therapists
Chaplain
PATIENT
Nurses
Social workers
Technicians
Nurses aids
HC Worker

8. Who needs palliative care?

9. World Mortality 2001 56.5 million deaths worldwide
76% in the developing regions, where over three-fourths of the population live
33 million deaths non-communicable conditions (58%)
18.3 million deaths communicable conditions (32.5%)
5.1 million from unintentional and intentional injuries (9%)
WHO, 2002

10. Global estimates for adults and children 2007
People living with HIV: million [30 – 36]
New HIV infections in 2007: 2.7 million [2.2 – 3.2]
Deaths due to AIDS in 2007: million [1.8 – 2.3]
July e

11. WHY Palliative care in hiv/aids?

12. Why Palliative Care in HIV/AIDS?
Pain and symptoms are experienced throughout the trajectory of the illness due to HIV, TB, and other related conditions
HAART is associated with significant side effects that need to be managed = increases adherence to treatment
Access to ARV is still limited to a small % of the PLWHA
As life expectancy increases with HAART, co-morbidities such as cancer, liver failure and cardiovascular diseases become prevalent
Patients, families and caregivers often require psycho-social and spiritual support

13. Symptom Prevalence in HIV/AIDS%
Fatigue and lack of energy
48–45
Weight loss
37–91
Pain
29-76
Anxiety
25-40
Insomnia
21-50
Cough
19-60
Nausea and vomit
17-43
Dyspnea and other respiratory symptoms
15-48
Depression or feeling sad
15-40
Diarrhea
11-32
Constipation
10-29
WHO, 2006

14. Integrated Model of Care for Chronic Conditions
Curative
Disease oriented
Palliative Care
Supportive-Symptom oriented
Bereavement
Diagnosis
Death
Disease Progression
Person living with HIV/AIDS
Family and Caregivers

15. Availability of and Access to Medications

16. Facts
In 2006, Western Europe and North America together accounted for 89 per cent of global consumption of morphine.
80 per cent of the world population lives in developing countries and consumes only 6 % of the morphine distributed worldwide
More than 50 countries in the world still do not have any opioids available
Opioids are not available in rural areas and in home care in most of the countries in the world
INCB, Press Release #4 p 11, March 2008

19. Opioids are Expensive
Comparative study
15 analgesic therapies, 12 countries
Monthly Morphine ED
3 street pharmacies
Number of therapies >33% than the monthly GNP per capita:
4% in developed countries
51% in developing countries
De Lima L, Sweeney C, Palmer JL, Bruera E. JPPCP Vol 3 (2), 2004

20. Education

21. Education in PM: Survey
All medical schools in Canada (16); UK (30), and 129 randomly selected in the USA and Western Europe
Countries/
Region
(%)
Mandatory Rotations
Elective Rotations
Educational Reading Material
Academic Faculty Positions
(% and Median) UK 64 82 72
55 and 1
Canada 14 71 70
62 and 2
USA 11 62 59
14 and 1
W Europe 19 30
21 and 1
p value
0.001
0.014
Oneschuk, Hanson, Bruera - An International Survey of Undergraduate Medical Education in Palliative Medicine JPSM, 2000

23. Palliative Care in Health Policy

24. HEALTH POLICY TOP DOWN BOTTOM UP Financing and Organization
Morbidity and mortality, socioeconomic and health needs
TOP DOWN
Palliative Care is developed, implemented and provided as a result of Policy
Structural Indicators
Process Indicators
Outcome Indicators
BOTTOM UP
Policy is created by influence and demand at the grass root level

26. Palliative Care in HIV/AIDS in LAC
Survey through the ALCP listserv, seminars and direct contacts
290 responses from 18 different countries
Countries with a rate of > 8% were included
Argentina, Brazil, Chile, Colombia, Mexico y Venezuela
Final sample size: 250

27. Palliative Care in HIV in LA
86% National Programs on HIV/AIDS in MOH
95% of the HIV/AIDS care is offered through public system
92% Include prevention
98% include ARVs
None have PC in public programs – only a few NGOs and private insurance programs (37%)
Pall care is paid by charities, (78%), out of pocket (61%) and insurance (50%)
Wenk, De Lima 2006

28. A moral imperative: Joint Declaration and Statement of Commitment
Coordinated by the International Association for Hospice and Palliative Care (IAHPC) and the Worldwide Palliative Care Alliance (WPCA)
More than 50 representatives of international, regional and national organizations from the field of Palliative Care, Pain, Cancer, HIV/AIDS, Psychiatry and Neurology
Individuals
Aim is to work on 7 areas: Recognition of palliative care and pain treatment as human rights, ensuring access to palliative care services, education, and eliminating barriers in opioids for pain treatment.
Signatures collected until World Hospice and Palliative Care Day – Oct 11
To sign:
IAHPC:
WPCA:
World Hospice Palliative Care Day: