Introduction
Children with chronic respiratory failure are a complex and heterogeneous population with varying ages, underlying diagnoses, intellectual abilities, prognoses, and social circumstances.1,2 Due to advances in medicine, this resource intensive population has increased. The number of children discharged annually from the hospital on long-term ventilation increased from 5026 to 7812 (55% increase) between 2000 and 20063. A study of over 140,000 pediatric intensive care unit (PICU) discharges in the United States from 2009 to 2011 found 1.8% of discharged patients received a tracheostomy during their PICU stay and/or were discharged on long-term ventilation2. These numbers underestimate the children with chronic respiratory failure (CRF) for whom a decision regarding tracheostomy was made since there are no studies which quantify the number of children for whom tracheostomy or long-term ventilation (LTV) was considered but not pursued.
A recent editorial in Pediatric Pulmonology emphasized the both the importance and the challenges of a shared decision making (SDM) approach prior to non-urgent tracheostomy placement in children4. Shared decision-making is “a collaborative process that allows patients, or their surrogates, and clinicians to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values, goals and preferences5.” SDM is most appropriate in cases where there is more than one reasonable choice. SDM has been increasingly promoted as a part of value based care that offers the potential to both reduce overuse of care not beneficial to the patient, and to center care around the patient6. Despite decades of research, there is limited experience with SDM in practice7. In general, most studies on SDM focus on how clinicians interact with patients, not on “team, organizational and system factors in which their interactions are embedded8.” Specifically, there are no studies that focus on the complex ecosystems in which the decisions regarding non-urgent tracheostomy placement occur.
In a cohort of children with chronic respiratory failure admitted to a small children’s hospital, this study utilizes a microsystem model9 as a lens through which to dissect the complex environment in which decisions regarding tracheostomy placement occurred. Based upon the findings, the authors propose a conceptual model for implementation of SDM in this population that would enable reproducibility, flexibility and measurement.