Check Your Bias: Providing Decisional Support for Incarcerated Surrogate Decision Makers

Abstract

Pediatric palliative care (PPC) supports complex decision-making for seriously ill children. This process requires compassionate and skillful communication with a child’s caregivers, most often the parents. When a caregiver is incarcerated, there is an additional layer of complexity in navigating these difficult conversations. We present the case of an infant with complex congenital heart disease, severe neurological impairment, and respiratory failure whose parents were faced with the decision to pursue life-prolonging medical care with a tracheostomy or end-of-life care with compassionate extubation. We describe how our interdisciplinary team recognized and navigated the teams’ biases, knowledge gaps, and logistical complexities to provide optimal decisional support to parents affected by incarceration. We aim for this case to raise awareness of an underexplored issue in the literature.