LILIANA DE LIMA, MHAEXECUTIVE DIRECTOR

INTERNATIONAL ASSOCIATION FOR HOSPICE AND PALLIATIVE CARE

XVII INTERNATIONAL AIDS CONFERENCEMEXICO CITY, AUGUST 2008

Palliative Care: a Key Component of

Care

Components of Care

PreventionEarly DetectionEffective TreatmentPalliative Care

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

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

Provision of Health Care: Classical Model

MD

SpecialistsNurses

Soc Workers

Chaplain

Nutritionists

TechniciansNurse aids

Caregivers

Therapists

Psychologists

Patient

Friends

Family

Palliative Care Model

PATIENT

FAMILY

Physicians

Social workers

Chaplain

Nutritionists

TechniciansNurses aids

Nurses

Therapists

Psychologists

HC Worker

Pharmacists

WHO NEEDS PALLIATIVE

CARE?

World Mortality 2001

56.5 million deaths worldwide 76% in the developing regions, where over three-

fourths of the population live33 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

July 2008 e

Global estimates for adults and children 2007

•People living with HIV: 33 million [30 – 36]

•New HIV infections in 2007: 2.7 million [2.2 – 3.2]

•Deaths due to AIDS in 2007: 2.0 million [1.8 – 2.3]

WHY PALLIATIVE CARE IN HIV/AIDS?

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 PLWHAAs 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

Symptom Prevalence in HIV/AIDS

Symptom %

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

CurativeDisease oriented

Palliative CareSupportive-Symptom oriented Bereavement

Diagnosis Death

Disease Progression

Person living with HIV/AIDS

Family and Caregivers

Integrated Model of Care for Chronic Conditions

Availability of and Access to Medications

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

Opioids are Expensive

Comparative study15 analgesic therapies, 12 countriesMonthly Morphine ED3 street pharmaciesNumber 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

Education

Education in PM: Survey

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 30 21 and 1

p value 0.001 0.001 0.014 0.001

Oneschuk, Hanson, Bruera - An International Survey of Undergraduate Medical Education in Palliative Medicine JPSM, 2000

All medical schools in Canada (16); UK (30), and 129 randomly selected in the USA and Western Europe

Palliative Care in Health Policy

TOP DOWNPalliative Care is developed,

implemented and provided as a result of Policy

HEALTH POLICYFinancing andOrganization

Morbidity and mortality, socioeconomic and health needs

BOTTOM UPPolicy is created by influence and demand at the grass

root level

Structural Indicators Process Indicators

Outcome Indicators

Palliative Care in HIV/AIDS in LAC

Survey through the ALCP listserv, seminars and direct contacts

290 responses from 18 different countriesCountries with a rate of > 8% were includedArgentina, Brazil, Chile, Colombia, Mexico y

VenezuelaFinal sample size: 250

Palliative Care in HIV in LA

86% National Programs on HIV/AIDS in MOH95% of the HIV/AIDS care is offered through

public system92% Include prevention98% include ARVsNone 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

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: www.hospicecare.com WPCA: www.wwpca.net World Hospice Palliative Care Day: www.worldday.org