A Parent’s Journey: Incorporating Principles of Palliative Care into Practice for Children with Chronic Neurologic Diseases

The role of the neuropediatrician in pediatric intensive care unit: Diagnosis, therapeutics and major participation in collaborative multidisciplinary deliberations about life-sustaining treatments’ withdrawal

“…15 They also have a communication expertise around eliciting patient and family preferences and integrating them into serious decision making. 16,17 Furthermore, their experience in end-of-life sustaining treatment improves the quality of care provided to the children and thus allow the PICU team to have a global vision of the patient and his/her relatives. This collaboration between both the intensivists (PICU), the specialists (e.g.…”

Parental coping in the context of having a child who is facing death: A theoretical framework

“…Perhaps that is what Sarah's parents were doing when they let go of the alternative therapies and focused on keeping Sarah comfortable and safe. In addition, parents consciously attempt to live in the present and prioritizing goals, especially those related to parenting (Brown & Clark, 2015; Kars et al, 2010; McGraw et al, 2012). Attachment theory can also explain parents' relentless pursuit of a cure and aggressive treatment (Kearney & Byrne, 2015).…”

Decision-making dilemmas of paediatricians: a qualitative study in Japan

“…Consequently, paediatricians make empirical decisions about the direction of therapy, which largely depend on what they consider to be essential for their patients’ well-being 5–10. Experts in paediatric palliative medicine also have difficulty due to a lack of evidence-based research in this area 11 12. For these reasons, paediatricians await a practically useful system that can support them in their decisions and offer patients appropriate treatment options.…”