Shared Decision-Making for Children With Chronic Respiratory Failure: It Takes a Village

Abstract

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.