Pediatric palliative care on the ground Examples of successful programs

1. Pediatric palliative care on the ground Examples of successful programs

2. DRA. RUT KIMAN • Head CPC Team . Hospital Nacional “Prof. A. Posadas”. Buenos Aires- Argentina • Department of Pediatrícs. Faculty of Medicine. University of Buenos Aires • PalliumLatinoamerica • International Children ‘s Palliative Care Network

3. During these ten minutes... • Regional perspective • Briefreportfocusonsomecountries • Reachingout: programmes, policies and partnerships

4. LATIN AMERICA Area : 21,069,501 km2 Population : 572,039,894 Countries19 Dependencies 1 Languages : • Spanish • Portuguese • French • Quechua • Mayan • Guaraní • Aymara

6. LATIN AMERICA • Poverty continues to be one of the region's main challenges • According to the ECLAC, Latin America is the most unequal region in the world. • More than half of the poor are children and adolescents and more than half of the children and adolescents are poor.

9. Pediatric Palliative Care Provision Around the World: A Systematic Review & Mapping Caprice Knapp, PhD, Lindsey Woodworth, BS, Rev. Michael Wright, PhD; Dr Julia Downing PhD

11. Models of care in LA • Lack of understanding about what children’s palliative care is • Few countries have health policies in support CPC • Primarily on teams working in tertiary care facilities (Hospital based teams) • Limited experiences in home care or in primary care facilities • Limited development of "Hospice” model (Costa Rica, Guatemala, Brazil) • More experience in children living with cancer • Lack of relevant training for health care professionals (undergraduate, postgraduate and during specialty training) • Limited literature and materials in Spanish • Services provided by pediatric subspecialists!! • Proactive advocacy efforts by NGO • Work/training without payment

12. ALCP PEDIATRIC COMMITTEE ...since 2010

13. Universal health coverage • CPC since 1990 • Lack of National CPC policy but in 1992 legislation recognized right to die with dignity and without pain. • Two Hospices: “Day centers” • In 1992 Fundación Pro Unidad de CP was established • Home care • Grief support • Undergraduate training(medicine, nursing, psychologists), postgraduate and masters degree • Recognition of PC specialists

14. Since 1982 but CPC 1992 • Mostly in tertiary facilities of Public health care system • Limited experience in home care or day centers • 11 Hospices for adults none for children • 15 CPC teams • Non- cancer models very developed • Undergraduate training (medicine, nursing schools), postgraduate and masters degree • By pediatric subspecialists (more than 15.000 pediatricians) • Partnership with international associations • Lack of National CPC policy but in 2012 legislation recognized right to die with dignity. PC law in some provinces • National standards from 2001 • 2009 recognition of PC specialty in nurses • NCI in 2011 • In process of recognition of PC specialty for physicians

15. Large public coverage • Public health policy (GES 2003) • Tertiary facilities mostly linked to children with cancer but also in primary care facilities • 1988 PINDA (PROGRAMA INFANTIL DE DROGAS ANTINEOPLASICAS) started • 2003 CPC in PINDA program: a multi-care PC model continuum care • Chronic diseases representing 34% of hospital expenses • 2008 Chilean Society of Pediatrics created a multi-disciplinary committee in charge of organizing care of children with special needs (NANEAS) • Undergraduate training (medicine, nursing schools, psychologists), compulsory in postgraduate since 2000 (GAFOS-Spain) • Multi-professional CPC teams • In process of recognition of PC specialty

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