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

Prevention Early Detection Effective Treatment Palliative Care Components of Care Prevention Early Detection Effective Treatment Palliative 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 Therapists Psychologists Soc Workers Nurses Specialists Chaplain Friends Patient MD Family Nutritionists Caregivers Technicians Nurse aids

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

Who needs palliative care?

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

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] July 2008 e

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 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

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

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

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 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

Education

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

Palliative Care in Health Policy

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

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

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

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