Tracheostomy and long‐term invasive ventilation decision‐making in children: A scoping review

Abstract

AbstractAn increasing number of children are surviving critical illnesses requiring tracheostomy/long‐term ventilation (LTV). This scoping review seeks to collate the available evidence on decision‐making for tracheostomy/LTV in children. Systematic searches of electronic databases and websites were conducted for articles and reports. Inclusion criteria included: (1) children 0–18 years old; (2) described use of tracheostomy or tracheostomy/LTV; and (3) information on recommendations for tracheostomy decision‐making or decision‐making experiences of family‐caregivers or health care providers. Articles not written in English were excluded. Of the 4463 records identified through database search and other methods, a total of 84 articles, 2 dissertations, 1 book chapter, 3 consensus statement/society guidelines, and 8 pieces of grey literature were included. Main thematic domains identified were: (1) legal and moral standards for decision‐making; (2) decision‐making models, roles of decision‐makers, and decisional aids towards a shared decision‐making model; (3) experiences and perspectives of decision‐makers; (4) health system and society considerations; and (5) conflict resolution and legal considerations. A high degree of uncertainty and complexity is involved in tracheostomy/LTV decision‐making. There is a need for a standardized decision‐support process that is consistent with a child's best interests and shared decision‐making. Strategies for optimizing communication and mechanism for managing disputes are needed.