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.