Pediatric Chronic Mechanical Ventilation Decision-Making Tool

Helping families make informed decisions for their child and family by hearing the lived-experiences of others who chose for and against pediatric chronic mechanical ventilation

The experts in making decisions for and against chronic medical technology for children are, of course, parents themselves. Parents facing these decisions often do want to hear other families’ experiences and experienced parents often wish to share their stories. Families should also have access to a full scope of stories from families who chose both for and against technologies, a balance that is difficult to standardize. Yet incorporating families’ voices into counseling is difficult to accomplish.


  • Construct a repository of family reflections on their prior decisions for or against tracheostomy/ chronic mechanical ventilation for their child.
  • Develop an interactive decision support tool ( ) that is meant to supplement clinician counseling about pediatric chronic mechanical ventilation

Methodology & Progress

We interviewed families (approximately half that chose for home mechanical ventilation and half that chose against) from across 3 states about their decision-making processes and lives after making decisions. We then worked with a professional agency, Booster Shot Media, to craft a decision-making tool based on family reflections. The tool was embedded in the website:

In the Zoom Room: Considering Tracheostomy With and Without Ventilation; Courageous Parents Network

(Presenters Boss, Henderson, Wilfond)

“What It Means for Our Family” – Video Decision Supports for Parents Considering Chronic Pediatric Mechanical Ventilation

Boss, R.D., Rothenberg, K., Raisanen, J.C. (2018). Berman Institute Research Retreat. Baltimore, MD. (Presented by R.D. Boss).

Making Decisions with Parents About Chronic Mechanical Ventilation for their Children: Are we helping or harming the dialogue?

Jabre, N., Wilfond, B., Sterni, L., Boss, R. (2019). The American Society of Bioethics and Humanities 21st Annual Conference. Pittsburgh, PA. (Presented by N. Jabre).

Exploring Parental Decision-making Regarding Long-term Ventilation for Children With and Without Severe Neurological Impairement

Munjapara, V., Bogetz, J., Wilfond, B., Henderson, C., Raisanen, J.C., Jabre, N., Shipman, K., Boss, R.D. (2020). State of the Science in Hospice and Palliative Care Meeting, American Academy of Hospice and Palliative Medicine (AAHPM). San Diego, CA. (Presenter, V. Munjapara).


Life with Pediatric Home Ventilation: Expectations versus Experience.  Pediatric Pulmonology 2021. Henderson CM, Raisanen J, Shipman K, Jabre N, Wilfond B, Boss RD.

Family Experiences Deciding For and Against Pediatric Home Ventilation. J Pediatrics 2020 Boss RD, Henderson CM, Raisanen JC, Jabre JA, Shipman K, Wilfond BS.

Decision-Making Tool

Core Team

Renee D. Boss, MD, MHS

Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics

Carrie M. Henderson, MD

University of Mississippi Medical Center

Nicholas Jabre, MD

Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics

Jessica C. Raisanen, MSPH

Johns Hopkins Berman Institute of Bioethics

Kelly J. Shipman, MS

Seattle Children’s Hospital and Research Institute

Benjamin S. Wilfond, MD

Seattle Children’s Hospital and Research Institute, University of Washington School of Medicine