Jornal de Pediatria
Print version ISSN 0021-7557
FLORIANI, Ciro A.. Home-based palliative care: challenges in the care of technology-dependent children. J. Pediatr. (Rio J.) [online]. 2010, vol.86, n.1, pp. 15-19. ISSN 0021-7557. http://dx.doi.org/10.1590/S0021-75572010000100004.
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.
Keywords : Home care services; palliative care; bioethics; disabled children; child health services.