Over the course of your child’s illness you will be prompted to consider some very difficult questions regarding clinical issues and your goals of care. Optimally, your child’s clinicians will lead you through these questions over time—although sometimes you will need to make relatively quick decisions. Through these continuing conversations, you and the clinicians can work together to talk about options for managing the issues, and together make decisions that work for your child and family. This process is commonly referred to as shared decision-making.

CPN co-authored this Guide with Kate Nelson, MD, PhD. Dr. Nelson runs the IDEA Lab, which Integrates Data, Experience, and Advocacy to support families and clinicians navigating medical uncertainty for children with life-threatening illnesses. The lab leverages Ontario medical data to answer questions asked by families about specific decisions, and partners with families to develop systems-level interventions to improve the experience of decision-making.