Jaime Jump, DO, FAAP / Faith Kinnear, APRN,CPNP-AC / Katie Evans, LCSW

There has been an increase in the number of patients pediatric providers care for that are chronically, critically ill. These patients often receive high level care from parents, guardians and nurses at home including advanced airway management, airway clearance, ventilator support, tube feedings and complex medication regimens. This is care that often cannot be provided on every floor in large pediatric specialty hospitals requiring admission to higher levels of care units. Due to the intensive care provided in these units it can be challenging to streamline communication amongst inpatient providers and provide care the parent or guardian feels is best for their child.

Parents may be labeled as challenging or in denial but often are struggling to agree on a path forward with their current providers. Strategies such as parallel planning, hoping for the best and preparing for everything else, shared decision making, setting limits of care when not in crisis, multidisciplinary rounds and family meetings are some of the ways to meet families where they are and progress their child's care forward. Admittedly it takes time to build this trust, and we will discuss some strategies for aligning with the family and overcoming barriers in cases where the provider team(s) doesn't agree or the patient has a significant change from baseline making prior goals unachievable.

We plan to illustrate these strategies through three case studies that highlight that alignment is not agreement; asking parents how they do it at home; making recommendations for time limited trials of interventions before revisiting sensitive topics like tracheostomy. We will discuss improved communication about family goals as a way to decrease moral distress of staff caring for these patients over multiple admissions as they get sicker and are admitted more frequently. Lastly, we'd like to demonstrate ways to respect the family wishes at the end of life including location of death, optimal symptom control and parental desires to present or not.

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