Major Decisions for Mature Minors: Navigating Misaligned Patient and Parent Values in Adolescent Tracheostomy Decision-Making
Friday, October 13, 2023
3:15 PM – 4:30 PM ET
Location: Galena (Fourth Floor)
Whether to pursue a tracheostomy in pediatric patients is a complex decision. Values-based considerations for the patient and family must be weighed with medical risks and benefits. Though adolescents’ assent is required, their autonomy over these decisions may be inhibited by the power differential with their parents/providers if their values do not align. This may lead patients/parents to experience decisional regret, unacceptable quality of life outcomes, and/or family conflict at end of life.
We will explore cases of adolescents faced with the possibility of tracheostomy and technology dependence as life-prolonging therapy who expressed differing values, preferences, and wishes from their parents. In the first case, a parent authorized a tracheostomy for her daughter during an acute, unexpected decompensation despite knowledge this would not align with her daughter’s wishes. In the second, a patient was convinced by parents and caregivers to accept a tracheostomy despite longstanding refusal. In the third, a patient refuses all surgical interventions which could necessitate a tracheostomy if unable to extubate. Adolescents’ motivations to avoid tracheostomy included loss of independence, voice, and mobility, as well as desire to live without mechanical dependence; their parents’ values focused on having more time with their child and fear/anxiety about adverse outcomes (including death of child). We will engage the audience and propose strategies for navigating these complex decisions involving mature minors and their parents, highlighting the clinician’s role in guiding shared decision-making that respects adolescents’ bodily autonomy and their parents’ decisional authority, and minimizes decisional regret when outcomes are uncertain.
Kerry Ryan – Research Area Specialist Senior, Center for Bioethics and Social Sciences in Medicine, University of Michigan Medical School; D'Anna Saul – Associate Professor, Pediatrics, University of Michigan, Michigan Medicine; Laura Taylor, MD, MSc – Assistant Professor, Pediatric Palliative Care, University of Michigan, Michigan Medicine; Kenneth Pituch, MD – Professor Emeritus, Pediatrics, University of Michigan, Michigan Medicine; Stephanie Kukora, MD – Assistant Professor, Neonatology and Bioethics, Children’s Mercy Kansas City