Mechanical ventilation for young people with Duchenne muscular dystrophy: a factorial survey of the main influences on clinician decision-making

This study aims to identify the main factors influencing a clinician’s decision to initiate life-sustaining invasive long-term ventilation (I-LTV) for a young person with Duchenne muscular dystrophy (DMD). We examined the key factors influencing a clinician’s decision to support the initiation of I-LTV for children with Duchenne muscular dystrophy using a vignette-based factorial survey. The survey was completed anonymously online (October 2021–January 2022) by Clinicians with experience in working with adolescents for whom I-LTV is being considered. A total of 244 Clinicians completed 510 vignettes. Controlling for other vignette factors, the main drivers of a clinician’s decision were the adolescent’s own views on initiation, as well as whether the parents agreed with the decision. When participants provided contextual comments, the importance of both the adolescent’s and the parents’ views was reemphasised. Disagreement between the parent and child about whether to proceed with initiation was indicated as a main strain when considering the clinician’s own stance on the decision. Clinicians also identified a need for support to manage situations where there is decisional discord between families, emphasising the importance of triadic shared decision-making and involving the wider multidisciplinary team. Conclusion: These findings underscore the importance of the child’s voice in clinicians’ decision-making when navigating these challenging bioethical dilemmas. Differing views regarding autonomy and parental involvement can complicate decision-making, pointing to the need for clinical environments that enable self-determination of young people. Furthering our understanding of the factors influencing clinicians’ decisions to initiate I-LTV is crucial in ensuring that these decisions are made transparently, with consideration for all those impacted, including the cultural, legal, and contextual factors that may influence decision-making.