Background and Objectives Shared decision making (SDM) before nonurgent tracheostomy in a child with chronic respiratory failure (CRF) is often recommended, 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 Twenty‐nine patients who met inclusion criteria ranged in age from 0 to 19.5 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 nonphysician led services. Answers to 12 key questions were not documented systematically and often not found in the electronic medical record. 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.
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.
The decision to place a tracheostomy in a child with chronic respiratory failure (CRF) is best made through a shared decision-making (SDM) process involving the clinical team and the patient/family. To date, no studies describe the complex ecosystem in which these decisions occur. In this case series, we identified common threads and variables in the medical ecosystem for each child. METHODS: From July 2016, through December 2020, an SDM process was incorporated into routine care of children with CRF who were < 18 years old, admitted to an inpatient service, and for whom tracheostomy was a consideration. When completely implemented, the process included a palliative care consult, a standardized decision aid and 12 questions designed to elucidate medical and psychosocial considerations. The investigators performed retrospective chart reviews with a focus on the 3 core elements of a medical microsystem: the patient, the provider and information. Results were entered in a REDCap database with descriptive analysis performed. RESULTS: The 29 patients who met inclusion criteria varied in age (0 to 18 years, median¼1.3) and length of stay (9 to 333 days, median¼45). 86% lived until discharge. 48% received tracheostomies. All patients were medically complex with multiple respiratory diagnoses and at least one co-morbidity. Frequent respiratory diagnoses included: neuromuscular weakness (66%), chronic aspiration (55%), chest wall deformity (31%), bronchopulmonary dysplasia (31%) and asthma (21%). Comorbidities included: swallowing dysfunction (93%), neurologic diagnoses (83%), cardiac diagnoses (62%), and genetic syndromes (45%). 28% of patients' families required language interpreting services. 30% of patients required permission from a governmental agency before limiting interventions. During the hospitalization reviewed, each patient encountered a mean of 6.2 medical specialties, 1.93 surgical specialties, and 8.47 non-physician specialties. The most frequent medical consult services were pulmonology (86%) and palliative care (69%). Chart review identified clear documentation of information relevant to the SDM in at least one note in the following areas: respiratory diagnoses and co-morbidities (100%); family understanding of the diagnoses (83%); effect of tracheostomy on respiratory and overall prognosis (79%,69%); family's hopes for the child (51%). However, this information was not recorded systematically. CONCLUSIONS: Common threads included the overarching diagnoses of CRF, medical complexity, clinical services encountered, and type of information needed. Heterogeneity among patients posed a challenge to standardization of a process that enables health care providers and the family to form a well-functioning team. CLINICAL IMPLICATIONS: Once the possibility of a tracheostomy is identified, an SDM team could be formed and organized around the unique information needed in each case.
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