Renee Boss

Discipline: Physician

Funding awarded to: The Johns Hopkins University School of Medicine & Berman Institute of Bioethics, Baltimore

The Big Picture Project

The Big Picture Project has three primary goals which focus on supporting 1) families, 2) individual clinicians, and 3) medical teams as they engage in longitudinal communication and decision-making for infants with congenital heart disease. The Family Support Intervention goal is to enhance families’ abilities to engage with the medical team over time around overall goals of care during prolonged ICU hospitalizations. The Clinician Education Intervention goal is to provide doctors and nurses with evidence-based training in the communication skills that promote longitudinal discussions with parents and other clinicians about goals of care. The System of Decision-Making goal is to better understand and impact the medical team’s ability to consistently and collaboratively revisit goals of care when making decisions for chronically critically ill infants.

My vision for the field of palliative care involves righting the injustices that currently characterize services for children. Children with serious and life-limiting illnesses deserve as many palliative care resources as are available for adults with similar conditions. Resources for infants are particularly important, as half of all pediatric deaths occur in infancy, and half of those occur in the first month of life. Almost all of those infants die in an ICU. Many die without ever having left the hospital after birth. Rarely is a young family prepared for the possibility that their baby will never come home, will never meet their siblings, will never sleep in their crib. But as clinicians, we are prepared for that, we know that this is going to be the case for some of our patients. We need greater skills and resources to guide families through this, to foster their resilience.