Catastrophic Rupture: A Memoir of Healing

Catastrophic Rupture: A Memoir of Healing was written by K. Jane Lee, MD, a member of Team Wisconsin. As a pediatric critical care physician and an ethicist, Lee was accustomed to caring for children with a range of serious conditions and disabilities, and felt comfortable helping families navigate decision-making for these children. When a complicated delivery left her second child with a severe brain injury, she found that everything she had learned about disability and personhood as a physician and ethicist was no help as a parent.

This book allows the reader to walk alongside the author as she struggles to bond with and love her daughter, as she reconciles what is happening at home with her ongoing role as a physician to patients and families in similar circumstances, and as she shifts from the medical perspective of disability as an impaired body to the mother’s perspective that sees the beauty and value in the person that is her child.

Team Wisconsin Journey Map

This graphic recording shows Team Wisconsin’s journey in collaborating with their partner organizations.

Goal Cards

Team Wisconsin created goal cards as a tool to spark ideas for families when they are asked about goals. Families are encouraged to review the cards online in advance of the visit and/or look through the actual cards during an in-person clinic visit to help the team focus their efforts on actions that are meaningful for the child and family.

Shared Plan of Care Summary

This template can be used to summarize the SPoC for the family and identify follow-up actions for each member of the care team.

Deciding Together Guide

This resource for families describes the steps of the Deciding Together process. The second page answers common questions about Deciding Together and prepares families for using the framework with the care team.

Deciding Together Guide Instructions

The Deciding Together Guide provides a clear, step-by-step team approach to facilitate dialogue between service coordinators and families using a family-centered, collaborative decision-making framework. This manual provides instructions for the team regarding how to facilitate each of the steps, factors to consider, and examples to help illustrate the steps.