Home-based palliative care: challenges in the care of technology-dependent children.
OBJECTIVE
To conceptualize palliative care and its indications in Pediatrics; to describe the difficulties involved in the delivery of such care at home for technology-dependent children; and to analyze, from a bioethical perspective, the moral dilemmas of palliative care assistance.


METHODS
A literature review of palliative care for technology-dependent children and a bioethical analysis of moral dilemmas.


RESULTS
There are several obstacles to palliative care for technology-dependent children: structural difficulties at home; social isolation of both children and families; health professionals' sense of disbelief regarding this type of care; an excessive number of medical devices at home; uncertainty of a terminal prognosis; physical, emotional, social, material, and financial burden for parents and family; changes in family dynamics to adjust to these children; paternalistic relationship between professionals and family; changes in family roles, with shifts in the caregiver role.


CONCLUSIONS
It is essential to outline an agenda based on the premise that the medical apparatus for technology-dependent children will change the landscape of the home, and such a change might become a problem to be faced by all those living together. Based on this assumption, actions performed in a setting other than a health care facility might exert an actual protective effect on children and family, offering support in their several needs and developing a model of care delivery that includes interventions in the different levels of burden on these vulnerated and unprotected individuals.
Saúde Pública, Núcleo de Etica Aplicada e Bioética, Escola Nacional de Saúde Pública Sérgio Arouca, Fundação Oswaldo Cruz (ENSP-FIOCRUZ), Rio de Janeiro, RJ, Brazil. ciroafloriani@gmail.com
Ciro A
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Floriani
D000293:Adolescent; D002648:Child; D003210:Concept Formation / Q000941:ethics; D006699:Home Care Services / Q000941:ethics; D006801:Humans; D013677:Medical Laboratory Science / Q000941:ethics; D010166:Palliative Care / Q000941:ethics; D010371:Pediatric Nursing / Q000941:ethics