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.