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March 4, 2026Journal of Palliative Medicine0 citations

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

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TBTalia BernhardMDMindy DickermanCLCarly Levy

Key Points

  • This case highlights the challenges faced by incarcerated parents in making critical health decisions for their seriously ill child.
  • Described the case of an infant with complex health issues and incarcerated parents.
  • Identified biases and knowledge gaps within the interdisciplinary team.
  • Discussed the communication strategies used to support the caregivers.
  • The team successfully navigated biases to improve the decisional support process.
  • Enhanced communication led to better understanding of the options available for the child’s care.
  • Raised awareness of the challenges faced by caregivers in similar situations.

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.

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Cite This Study

Bernhard et al. (2026) studied this question.

synapsesocial.com/papers/69a7cd0bd48f933b5eed9170https://doi.org/10.1177/10966218261426884
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