<?xml version="1.0" encoding="ISO-8859-1"?><article xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance">
<front>
<journal-meta>
<journal-id>0123-3122</journal-id>
<journal-title><![CDATA[Persona y Bioética]]></journal-title>
<abbrev-journal-title><![CDATA[pers.bioét.]]></abbrev-journal-title>
<issn>0123-3122</issn>
<publisher>
<publisher-name><![CDATA[Universidad de la Sabana]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S0123-31222019000100111</article-id>
<article-id pub-id-type="doi">10.5294/pebi.2019.23.1.7</article-id>
<title-group>
<article-title xml:lang="es"><![CDATA[La observancia de la bioética en el cuidado paliativo de enfermos con esclerosis lateral amiotrófica]]></article-title>
<article-title xml:lang="en"><![CDATA[The observance of bioethics in the palliative care of patients with amyotrophic lateral sclerosis]]></article-title>
<article-title xml:lang="pt"><![CDATA[A observância da Bioética no cuidado paliativo de doentes com esclerose lateral amiotrófica]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Scull-Torres]]></surname>
<given-names><![CDATA[Maricela]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,Facultad de Ciencias Médicas  ]]></institution>
<addr-line><![CDATA[La Habana ]]></addr-line>
<country>Cuba</country>
</aff>
<pub-date pub-type="pub">
<day>00</day>
<month>06</month>
<year>2019</year>
</pub-date>
<pub-date pub-type="epub">
<day>00</day>
<month>06</month>
<year>2019</year>
</pub-date>
<volume>23</volume>
<numero>1</numero>
<fpage>111</fpage>
<lpage>121</lpage>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://www.scielo.org.co/scielo.php?script=sci_arttext&amp;pid=S0123-31222019000100111&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://www.scielo.org.co/scielo.php?script=sci_abstract&amp;pid=S0123-31222019000100111&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://www.scielo.org.co/scielo.php?script=sci_pdf&amp;pid=S0123-31222019000100111&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="es"><p><![CDATA[Resumen La esclerosis lateral amiotrófica (ELA) es una enfermedad neurodegenerativa de etiología desconocida, curso progresivo y pronóstico desfavorable, para la cual no existe tratamiento curativo. Muchos son los profesionales de la salud involucrados en la atención de un paciente con ELA. El manejo apropiado de los problemas éticos es de gran importancia en todas las etapas de la ELA. El objetivo del siguiente trabajo es identificar las categorías éticas más vulneradas que atentan la calidad de la atención a estos pacientes. Se realizó una investigación cualitativa, cualitativa, observacional, descriptiva, longitudinal; se empleó la observación participativa y se tomó como base el espectro completo de cuestiones éticas en la atención de pacientes con ELA. Como resultado se encontró cumplimiento incompleto del respeto al derecho del paciente a una información completa, poca consideración de las consecuencias de la información insuficiente, así como irrespeto por las preferencias de la persona enferma en el tratamiento de situaciones de emergencia. Las categorías más vulneradas por los profesionales de salud fueron: el proceso de toma de decisiones, la toma de decisiones al final de la vida y la indicación médica.]]></p></abstract>
<abstract abstract-type="short" xml:lang="en"><p><![CDATA[Abstract Amyotrophic lateral sclerosis is a neurodegenerative disease of unknown etiology, progressive course and unfavorable prognosis, for which there is no curative treatment. Many are the health professionals involved in the care of a patient with ALS. The proper handling of ethical problems is of great importance in all stages of ELA. The objective of the following work is to identify the most vulnerable ethical categories that threaten the quality of care for these patients. A qualitative longitudinal descriptive observational research was carried out, participatory observation was used and the full spectrum of ethical issues in the care of patients with ALS was taken as a basis. As a result, incomplete compliance with the patient&#8217;s right to complete information was found, little consideration of the consequences of insufficient information, and disrespect for the preferences of the sick person in the treatment of emergency situations. The categories most affected by health professionals were: The decision-making process, decision making at the end of life and medical indication.]]></p></abstract>
<abstract abstract-type="short" xml:lang="pt"><p><![CDATA[Resumo A esclerose lateral amiotrófica (ELA) é uma doença neurodegenerativa de etiologia desconhecida, curso progressivo e prognóstico desfavorável, para a qual não há tratamento curativo. Muitos profissionais da saúde estão envolvidos na atenção de um paciente com ELA. O manejo apropriado dos problemas éticos é de grande importância em todas as etapas dessa doença. Este trabalho tem como objetivo identificar as categorias éticas mais vulneradas que atentam a qualidade da atenção a esses pacientes. Foi realizada uma pesquisa qualitativa, observacional, descritiva e longitudinal; foram utilizados a observação participativa e, como base, o espectro completo de questões éticas na atenção de pacientes com ELA. Como resultado, verificou-se que não se cumpriu totalmente o direito do paciente a uma informação completa, que houve pouca consideração das consequências da informação insuficiente, bem como desrespeito das preferências da pessoa doente no tratamento de situações de emergência. As categorias mais vulneradas pelos profissionais da saúde foram: o processo de tomada de decisões; a tomada de decisões no final da vida e a indicação médica.]]></p></abstract>
<kwd-group>
<kwd lng="es"><![CDATA[esclerosis amiotrófica lateral]]></kwd>
<kwd lng="es"><![CDATA[solución de problemas]]></kwd>
<kwd lng="es"><![CDATA[problemas éticos]]></kwd>
<kwd lng="es"><![CDATA[códigos de ética]]></kwd>
<kwd lng="es"><![CDATA[calidad de la atención de salud]]></kwd>
<kwd lng="en"><![CDATA[Amyotrophic lateral sclerosis]]></kwd>
<kwd lng="en"><![CDATA[problem solving]]></kwd>
<kwd lng="en"><![CDATA[ethical problems]]></kwd>
<kwd lng="en"><![CDATA[codes of ethics]]></kwd>
<kwd lng="en"><![CDATA[quality of health care]]></kwd>
<kwd lng="pt"><![CDATA[esclerose amiotrófica lateral]]></kwd>
<kwd lng="pt"><![CDATA[resolução de problemas]]></kwd>
<kwd lng="pt"><![CDATA[problemas éticos]]></kwd>
<kwd lng="pt"><![CDATA[códigos de ética]]></kwd>
<kwd lng="pt"><![CDATA[qualidade da assistência à saúde]]></kwd>
</kwd-group>
</article-meta>
</front><back>
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