loading page

Shared Decision Making For Children with Chronic Respiratory Failure- It Takes a Village and a Process
  • Katharine Kevill,
  • Grace Ker,
  • Rina Meyer
Katharine Kevill
Stony Brook University Health Sciences Center School of Medicine

Corresponding Author:[email protected]

Author Profile
Grace Ker
Stony Brook University Health Sciences Center School of Medicine
Author Profile
Rina Meyer
Stony Brook University Health Sciences Center School of Medicine
Author Profile


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.
27 Nov 2020Submitted to Pediatric Pulmonology
28 Nov 2020Submission Checks Completed
28 Nov 2020Assigned to Editor
29 Nov 2020Reviewer(s) Assigned
20 Dec 2020Review(s) Completed, Editorial Evaluation Pending
21 Dec 2020Editorial Decision: Revise Major
16 Mar 20211st Revision Received
17 Mar 2021Submission Checks Completed
17 Mar 2021Assigned to Editor
17 Mar 2021Reviewer(s) Assigned
31 Mar 2021Review(s) Completed, Editorial Evaluation Pending
01 Apr 2021Editorial Decision: Revise Minor
02 Apr 20212nd Revision Received
03 Apr 2021Reviewer(s) Assigned
03 Apr 2021Submission Checks Completed
03 Apr 2021Assigned to Editor
05 Apr 2021Review(s) Completed, Editorial Evaluation Pending
07 Apr 2021Editorial Decision: Accept