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.
J Pediatr (Rio J). 2010 Jan-Feb;86(1):15-20. doi: 10.2223/JPED.1972.
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.
A literature review of palliative care for technology-dependent children and a bioethical analysis of moral dilemmas.
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.
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.
概念化儿科姑息治疗及其指征；描述在家中为依赖技术的儿童提供此类护理的困难；并从生物伦理的角度分析姑息治疗援助的道德困境。
对依赖技术的儿童进行姑息治疗的文献回顾和对道德困境的生物伦理分析。
依赖技术的儿童的姑息治疗存在几个障碍：家庭中的结构性困难；儿童和家庭的社会孤立；卫生专业人员对这种护理类型的怀疑感；家中过多的医疗设备；终端预后的不确定性；父母和家庭的身体、情感、社会、物质和经济负担；家庭动态的变化以适应这些孩子；专业人员和家庭之间的家长式关系；家庭角色的变化，照顾者角色的转变。
必须根据以下前提制定议程，即依赖技术的儿童的医疗设备将改变家庭的面貌，这种变化可能成为所有共同生活的人都需要面对的问题。基于这一假设，在医疗保健机构以外的环境中进行的行动可能会对儿童和家庭产生实际的保护作用，满足他们的各种需求，并开发一种护理提供模式，包括对这些脆弱和不受保护的个人的不同负担水平进行干预。
