Collaborative decision-making: A framework for decision-making about life-sustaining treatments in children with medical complexity.

Objective: Caregivers of children with medical complexity (CMC) face decisions about life-sustaining treatments (LST) like tracheostomy. We sought to develop a clinically relevant and realistic model for decision-making about tracheostomy placement that might apply to other LST in CMC.

Design: This qualitative study, conducted between 2013 and 2015, consisted of 41 interviews with 56 caregivers of CMC who had received tracheostomies and 5 focus groups of 33 healthcare providers (HCPs) at a tertiary-care children's hospital in North Carolina. Participants were asked about their perspectives on the tracheostomy decision-making process. Data were transcribed, and coded. Using thematic content analysis, we inductively developed a tracheostomy decision-making framework and process.

Results: Many factors influenced caregivers' decisions, including children's well-being and caregivers' values, faith, knowledge, experience, emotional state, and social factors; preserving the child's life was the most important. HCPs consider many clinical and nonclinical factors; recommending tracheostomy for children with limited survival, perceived poor functioning and quality of life, and progressive conditions is ethically difficult. The framework of tracheostomy decision-making has inter-related caregiver- and HCP-level factors that influence the process. The framework contains elements not captured in a shared decision-making model, but better fits a collaborative decision-making (CDM) model. The tracheostomy CDM process that emerged from the data has two nonsequential components that HCPs could use: (1) gaining understanding and (2) holding decision-making conversations.

Conclusions: CDM could be a useful model for clinicians guiding families about tracheostomy for CMC. The applicability of CDM for decision-making about other LSTs needs further exploration.