Pediatr Crit Care Me
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Pediatr Crit Care Me · May 2014
Multicenter StudyParental Perspectives on Suffering and Quality of Life at End-of-Life in Children With Advanced Heart Disease: An Exploratory Study.
To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease. ⋯ According to their parents, many children with advanced heart disease experience suffering in the end-of-life care period. For most, realization that their child has no realistic chance of survival does not occur until late, some not until death is imminent. Once this realization occurs, however, parents perceive peacefulness, a "good death," and excellent quality of care. Strategies for improved communication around symptom management, quality of life, prognosis, and advance care planning are needed for families of children with advanced heart disease.