Pediatric palliative care on the ground Examples of successful programs

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

Regional perspective Regional perspective Brief report focus on some countries Brief report focus on some countries Reaching out: programmes, policies and partnerships Reaching out: programmes, policies and partnerships During these ten minutes...

LATIN AMERICA Area Area : 21,069,501 km 2 Population Population : 572,039,894 Countries Dependencies Countries 19 Dependencies 1 Languages Languages : -Spanish -Portuguese -French -Quechua -Mayan -Guaraní -Aymara

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.

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

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

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

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 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 recognition of PC specialty in nurses NCI in 2011 In process of recognition of PC specialty for physicians

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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