Shared decision making for children with chronic respiratory failure-It takes a village and a process

Title

Shared decision making for children with chronic respiratory failure-It takes a village and a process

Creator

Kevill K; Ker G; Meyer R

Identifier

Publisher

Pediatric Pulmonology

Date

2021

Subject

tracheostomy; chronic respiratory failure; shared decision making; long-term mechanical ventilation

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

June 2021 List

Collection

Citation

Kevill K; Ker G; Meyer R, “Shared decision making for children with chronic respiratory failure-It takes a village and a process,” Pediatric Palliative Care Library, accessed October 21, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17576.

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