Toma de decisiones

For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with síndrome de Cornelia de Lange (CdLS). 

La implicación de los pacientes con SCdL y los profesionales en decisiones de atención sanitaria es esencial. La discapacidad intelectual y las deficiencias en la función ejecutiva en pacientes con SCdL puede reducir la habilidad del paciente para la toma de decisiones. En esos casos, los profesionales de atención sanitaria deben decidir qué es lo mejor y documentar los valores de la persona, sus preferencias y su calidad de vida.

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