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Department of Psychology pres.

CCN Forum: Aiding Difficult and High-Stakes Medical Decision Making—Research on Tracheotomy Decisions for Critically Ill Children

Haoyang Yan, CCN Graduate Student

Many challenges exist in medical decisions where there is a continuum of treatment possibilities. For instance, parents are sometimes faced with value-laden tracheotomy decisions, choosing between accepting a machine-dependent life for their child or allowing death. Both providers and parents find these decisions difficult to discuss and make. Thus, there is a need to understand and improve the decision process for promoting high-quality provider-parent communication and decision making. A series of qualitative and quantitative studies have revealed that parents lack understanding of long-term implications in order to accurately forecast possible outcomes. An experimental survey study has shown that other parents’ narratives of child’s long-term quality of life and home care challenges reduced the tendency to choose tracheotomy and increased concerns for future outcomes. These findings suggest that providing other parents’ experiences could be a feasible way to support parents to make informed decisions. An intervention development study is in progress to produce a variety of narratives for decision aiding.

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