Abstract

SCULL-TORRES, Maricela. The observance of bioethics in the palliative care of patients with amyotrophic lateral sclerosis. pers.bioét. [online]. 2019, vol.23, n.1, pp.111-121. ISSN 0123-3122.  https://doi.org/10.5294/pebi.2019.23.1.7.

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’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.

Keywords : Amyotrophic lateral sclerosis; problem solving; ethical problems; codes of ethics; quality of health care.

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