1. Jennifer Hwang, MD, MHS Pediatric Advanced Care Team The Children’s Hospital of Philadelphia

2.  Listening and respecting the child and family  Ensure flexibility  Sharing complete, honest and unbiased information  Providing and/or ensuring formal and informal support  Collaboration with patients and families at all levels of health care  Recognizing and building on the strengths of individual children and families

3.  What is the central issue? Why is a change needed?  Who are the stakeholders?  Timeline/Venue(s)?  What are the steps needed to accomplish the goal?

4.  Change in medical condition  Change in location  Change in caregivers  Change in goals

5.  Family  Medical Team  Nursing Agency  LTC facility  Hospice  Local Hospital  School District  EMS/First Responders  Transport Company  Faith Community  Extended Family and Friends

6.  Pre-meeting of primary stakeholders (face to face or conference call)  Describe anticipated changes and walk- through possible outcomes  Explicitly name the person responsible for each task  Checklists  Anticipate imperfection  Plan for ongoing, regular communication

7.  Who is writing the orders?  How can orders be changed?  Are all stakeholders prepared for their new role?  What are the “what ifs?”  How do you minimize disruption to the most number of people?

8.  Direct contact with providers or agencies  Support during contact with providers or agencies  Documentation of changing status or care plan  Non-biased listening to chronic or new frustrations  Prioritization of tasks  Organization/coordination of ongoing household task

9.  Financial Resources  Physical Space  Language  Cultural awareness  Time!

10.  The best in family and child centered care  Provides meaningful roles for invested stakeholders