Home-based palliative care: Challenges in the care of technology-dependent children

Objectives: 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. sources: a literature review of palliative care for technology-dependent children and a bioethical analysis of moral dilemmas. summary of the findings: 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. copyright © 2010 by sociedade brasileira de pediatria.