Shared Decision Making For Children with Chronic Respiratory Failure- It
Takes a Village and a Process
Abstract
Background and objectives: Shared decision making (SDM) prior to
non-urgent tracheostomy in a child with chronic respiratory failure
(CRF) is recognized as the standard of care, but has proven challenging
to implement in practice. We hypothesize that utilization of the
microsystem model for analysis of the complex ecosystem in which SDM
occurs will yield insights that enable formation of a reproducible,
measurable SDM process. Methods: Retrospective chart review of a case
series of children with CRF in whom a SDM process was pursued. The
process included a palliative care consult, a validated decision aid and
12 key questions designed to elucidate information integral to an
informed decision. Investigators reviewed a single hospital admission
for each child, focusing on the 3 core elements of a medical
microsystem- the patient, the providers, and information. Results: 29
patients who met inclusion criteria ranged in age from 0 to 19 years
(median 1.7) and remained in the hospital from 10 to 316 days (median
38). Patients were medically complex with multiple and varied
respiratory diagnoses, multiple and varied comorbidities, and varying
psychosocial environments. 14/29 children received tracheostomies. Each
child encountered a mean of 6.2 medical specialties, 1.9 surgical
specialties and 8.5 non-physician led services. Answers to 12 key
questions were not documented systematically and often not found.
Conclusion: A unique SDM microsystem is formed around each child but not
optimally utilized. Explicit recognition of these microsystems would
enable team formation and an SDM process comprised of measurable steps
and communication patterns.