International Palliative Care Network Lecture Series 2014 under the auspices of the European Association for Palliative Care

System Burden and Distress in Patients with Cancer Sofía Bunge

Programa Argentino de Medicina Paliativa-Fundación FEMEBA Argentinawww.paliativo-femeba.org

Sofía Bunge Palliative Care Physician Programa Argentino de Medicina Paliativa- Fundación FEMEBA Hospice Casa de la Bondad Fundación Icalma de Cuidados Integrales Hospital Zonal de Oncología L Fortabat. Olavarría

About the Presenter Sofia Bunge is an attending physician in the Palliative Care Unit, Tornú Hospital, Programa Argentino de Medicina Paliativa-Fundación Femeba (PAMP-FF) in Buenos Aires, Argentina. Education Coordinator of the PAMP-FF. Medical Director of Hospice Casa de la Bondad, Manos Abiertas Foundation, Buenos Aires. Member of Icalma – Fundación de Cuidados Integrales Attending physician in Oncology Hospital L. Fortabat Olavarría. Her interests include increasing the understanding of palliative care among healthcare professionals in Argentina.

Conflict of Interest or funding source There are no conflicts of interest.

WHO Definition of Palliative Care Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with 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.

Palliative Care: Patient and family centered

Patient and Family Needs Illness Treatment Losses, pain, grief Assistance in death process Assistance in death process Practical Spiritual Social Psycological Physical Adapted from Frank Ferris

Patient and Family Potential Burdens Access to Illness Treatment Access to Illness Treatment Access to studies Access to sympton treatment Access to sympton treatment Administrative bureaucracy Administrative bureaucracy Not enough of comprehensive care Not enough of comprehensive care Transport-distances Fragmented health care system Fragmented health care system Access to medical appoinments Access to medical appoinments

Argentine Health System Government-funded Health Services covers approximately 50 percent of the population Social Security (Obras Sociales) Private Medical Sector

Argentine Health System Salud Pública Méx 2011; Vol. 53(2):96-108

Obstacle Race- Steeplechase

Patient and Family Potential Burdens Access to Illness Treatment Access to Illness Treatment Access to studies Access to sympton treatment Access to sympton treatment Administrative bureaucracy Administrative bureaucracy Not enough of comprehensive care Not enough of comprehensive care Transport-distances Fragmented health care system Fragmented health care system Access to medical appoinments Access to medical appoinments

Palliative Care Needs vs. Offer

IT IS ESTIMATED THAT EVERY YEAR AT LEAST 96,664 PEOPLE NEED PALLIATIVE CARE IN ARGENTINA 170 – – PEOPLE OVER 18 YEARS IN NEED OF PALLIATIVE CARE PER 100,000 POPULATION BY PROVINCE ( ). Annualized. SOURCE: SIVER / INC EN BASE A DATOS DE LA DEIS. MINISTERIO DE SALUD DE LA NACIÓN.

P ALLIATIVE C ARE S ERVICES IN A RGENTINA S OURCE : ALCP. A TLAS DE C UIDADOS P ALIATIVOS EN L ATINOAMÉRICA. A RGENTINA. 11 HOSPICE 21 HOME CARE ( MOSTLY PRIVATE, SOME NGOS AND SOCIAL SERVICES ) 40 SERVICES IN H OSPITALS ( PUBLIC AND PRIVATE ) 80 SUPPORT TEAMS 152 PALLIATIVE CARE SERVICES 170 – –

Availability of Medicines Good availability of medicines in Argentina Problem: distribution and provision Opioids: morphine consumption (mg per capita) : 9.02 (2008)

Cancer Pain 2/3 of cancer patients have pain Less than half of them receive appropiate treatment

National Cancer Institute (INC) -Administración Nacional de Medicamentos y Tecnología Medica ANMAT- Asociación Argentina de Medicina y Cuidados Paliativos (AAMYCP) Agreement 2012 Achieve accessibility to opioid treatment ensuring regulations aimed to prevent misuse and leakage into the illegal market

Increasing trend among health care professionals to learn about palliative care. National Cancer Institute created in Hegemonic medical model

Advances 2014 Public production of methadone and morphine Disposition Anmat 4790 y 3406 Free of cost for cancer patients in the Public Health System

System Burden and Distress in Patients with Cancer Increasing trend among health care professionals to learn about palliative care. National Cancer Institute created in One of its specific objectives: to promote quality and equity of care in patients with cancer. Hegemonic medical model

Discussion The Health system in the Argentina isn´t centered on the patient and their family, they must suit to the existing system with their own organization and particular scheme, with the result of considerable burden and distress for the patients with cancer.

Acknowledgements Roberto Wenk Graciela Jacob Marcelo Sarlingo Frank Ferris