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      Aproximación en torno a la adecuación del esfuerzo terapéutico en pacientes pediátricos con patología neurológica grave y dependientes de ventilación mecánica crónica (I parte) Translated title: Fitness of therapeutic effort in pediatric patients with severe neurological pathology and depending on mechanical ventilation (Part I)

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          Abstract

          El avance de la tecnología ha motivado la aparición de dilemas éticos en pacientes, que pese a su patología, se han mantenido vivos con una mala calidad de vida. Se plantea la adecuación del esfuerzo terapéutico (AET), como una forma de evitar terapias desproporcionadas y aportar las medidas útiles en pacientes con enfermedades crónicas o terminales.

          Translated abstract

          The advancement of technology has led to the emergence of ethical dilemmas in patients who, despite their condition, have remained alive with a poor quality of life. The fitness of therapeutic effort is proposed as a way to avoid disproportionate therapies and provide appropriate measures in patients with chronic or terminal illnesses.

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          Most cited references37

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          Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice:

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            Guidelines on forgoing life-sustaining medical treatment

            (1994)
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              What accounts for differences or disparities in pediatric palliative and end-of-life care? A systematic review focusing on possible multilevel mechanisms.

              The goal was to clarify potential mechanisms underlying differences/disparities in pediatric palliative and end-of-life care. We systematically searched online databases to identify articles relating to differences/disparities in pediatric palliative and end-of-life care, retaining 19 studies for evaluation. We then augmented this search with a broader review of the literature on the mechanisms of differences/disparities in adult palliative and end-of-life care, general pediatrics, adult medicine, and pain. The concept of reciprocal interaction can organize and illuminate interacting mechanisms across 3 levels of human organization, namely, broader contextual influences on patients and clinicians, specific patient-provider engagements, and specific patients. By using this rubric, we identified 10 distinct mechanisms proposed in the literature. Broader contextual influences include health care system structures; access to care; and poverty, socioeconomic status, social class, and family structure. Patient-clinician engagements encompass clinician bias, prejudice, and stereotypes; concordance of race; quality of information exchange; and trust. Patient-specific features include perceptions of control; religion and spirituality; and medical conditions. Differences and disparities in pediatric palliative and end-of-life care can be understood as arising from various mechanisms that interact across different levels of human organization, and this interactive multilevel model should be considered in designing studies or planning interventions to understand differences and to ameliorate disparities.
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                Author and article information

                Journal
                rcher
                Revista chilena de enfermedades respiratorias
                Rev. chil. enferm. respir.
                Sociedad Chilena de Enfermedades Respiratorias (Santiago, , Chile )
                0717-7348
                March 2015
                : 31
                : 1
                : 48-51
                Affiliations
                [01] Santiago orgnameSociedad Chilena de Enfermedades Respiratorias Chile
                Article
                S0717-73482015000100007 S0717-7348(15)03100100007
                efe3ee0c-ce39-49de-98a1-66b18c022556

                This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

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                Figures: 0, Tables: 0, Equations: 0, References: 18, Pages: 4
                Product

                SciELO Chile

                Categories
                Ética Médica

                quality of life,Limitation,proporcionalidad,calidad de vida,limitación del esfuerzo terapéutico,Adecuación,fitness of therapeutic effort

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