Background: The parent of a child with profound cognitive disability will have complex decisions to consider throughout the life of their child. An especially complex decision is whether to place a tracheotomy to support the child's airway. The decision may involve the parent wanting a tracheotomy and the clinician advising against this intervention or the clinician recommending a tracheotomy while the parent is opposed to the intervention. This conflict over what is best for the child may lead to a bioethics consult.
Objective: The study explores the conflicts that may arise around tracheotomy placements.
Research design: This study is a retrospective cohort study of pediatric patients for whom a tracheotomy decision required a bioethics consult.
Participants and research context: Pediatric patients aged birth to 18 years old with a bioethics consult for a tracheotomy decision conflict between April 2010 and December 2016. A standardized data collection tool was used to review notes entered by the palliative care team, social workers, primary clinical team interim summaries, and the bioethics consult service.
Ethical considerations: The study was reviewed and approved by the medical center's institutional review board.
Results: There were 248 clinical bioethics consults during the identified study period. There were 31 consults involving 21 children where the word tracheotomy was mentioned in the consult, and 13 of the 21 consults were for children with profound cognitive disability.
Discussion and conclusion: Clinicians need to be aware of their own biases when discussing a child's prognosis and treatment options while also understanding the parents' values and what the parent might consider to be burdensome in the care of their child and the acceptable burden for the child to experience.
Keywords: Clinical ethics; ethics and children in care; pediatric practice; profound cognitive disability; tracheotomy; tracheotomy decision.