Abstract

SALINAS, Pamela et al. Dilemas éticos en niños con enfermedades neuromusculares y dependencias tecnológicas : Ethical dilemmas in children with neuromuscular diseases and technological dependencies. Arch. Pediatr. Urug. [online]. 2016, vol.87, n.2, pp.157-160. ISSN 0004-0584.

In recent years, specialized and principally noninvasive respiratory care and other technological advances have better maintained quality of life and survival of patients with neuromuscular diseases. The nature of therapeutic options i.e. invasive vs. noninvasive, psychological, social, and financial constraints all have ethical ramifications. It is therefore essential that the clinicians understand all therapeutic options and psychosocial factors when informing patients as to their advantages, disadvantages, and associated costs so that the parents can make well informed decisions. New developments include more accurate prenatal and neonatal testing, new gene therapies, and noninvasive respiratory aids to avert episodes of respiratory failure and invasive airway tubes. Empowering patients and their families to educate and train personal assistance services rather than be dependent on institutions and ongoing nursing services and recent technological advances facilitates their remaining in their homes rather than be constrained to a lifetime of institutionalization and ongoing nursing services. The latter infantilizes patients rather than promotes autonomy. Financial considerations, gene therapies, prenatal screening, and therapeutic options that promote autonomy all have ethical implications. Some of the advances discussed in this article call for a paradigm shift in the way that clinicians see and treat these individuals.

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